My apologies for getting to this so late. It's been a tad crazy.
Olivia was discharged from the hospital on Friday night (this is Sunday afternoon) ... only four days after her heart surgery! Amazing. The doctors said she was doing incredibly well and were impressed with her recovery. So they (unexpectedly) released her after a few days instead of the usual 10–14 days. That means we don't get the benefit of highly-paid babysitters keeping an eye on her while we are away. All the poopy diapers are ours to change, all the cries are ours to soothe, and all the hours of the night are ours to explore with this little one.
Since then we have been at home trying to catch up from the exhausting 15-hour days in the hospital.
Olivia still has staples in her chest, but they should be removed on Thursday. People keep asking who she looks like, and I say, "Frankenstein from the neck down, but Kayla as a newborn from the neck up."
She's on one painkiller for the next day, a daily blood thinner until her next surgery at about 6 months old, and a medicine that expands the plumbing around her heart so she can pump blood effectively throughout her body.
Other than that, and the slight blue/purple color she almost always has, Olivia is a normal newborn ... albeit with the need for two more major surgeries or a creative miracle. We are asking God to break in with the miracle.
Sunday, September 17, 2006
Monday, September 11, 2006
Olivia's Surgery Complete
Olivia's surgery is complete. She had a shunt put in about the diameter of a pencil, and it took about an hour. She will have a bit of time to recover (three days to be out of the "critical" timeframe). Then she will have up to 2 weeks to be fully recovered.
Thanks for praying for her.
You guys are great!
Thanks for praying for her.
You guys are great!
Surgery Prep
It is 2PM here and Olivia has not been taken yet. Apparently the prior surgery is taking a while longer than expected. And I hope they grab lunch before they start on her.
They have about 40 minutes of prep to do beforehand so they will hopefully take her soon. We were just told she may be the last surgery of the day.
We've been praying for a creative miracle with the understanding that it may come to the point of needing surgery. Olivia's oxygen saturation level has been in the high 80s all morning, which is unheard of ... it's a great thing. So I pushed for one last echo and they did it. No info yet on the results. So pretty soon it will come to the point of switching gears to pray for the medical personnel.
*********
The anesthesiologist just stepped in. It's time to roll.
Time to pray for the medical personnel. They've done this a lot, so it will be successful anyways ... but we always like to cover them in prayer.
Guide them, Father. Take care of Your little girl.
Thanks for praying with us.
They have about 40 minutes of prep to do beforehand so they will hopefully take her soon. We were just told she may be the last surgery of the day.
We've been praying for a creative miracle with the understanding that it may come to the point of needing surgery. Olivia's oxygen saturation level has been in the high 80s all morning, which is unheard of ... it's a great thing. So I pushed for one last echo and they did it. No info yet on the results. So pretty soon it will come to the point of switching gears to pray for the medical personnel.
*********
The anesthesiologist just stepped in. It's time to roll.
Time to pray for the medical personnel. They've done this a lot, so it will be successful anyways ... but we always like to cover them in prayer.
Guide them, Father. Take care of Your little girl.
Thanks for praying with us.
Saturday, September 09, 2006
Surgery Monday
Olivia is scheduled as the third heart surgery on Monday morning. That means sometime between 10AM and 1PM most likely. It will last anywhere from one to four hours depending on complications.
She will be sedated for at least one day afterwards to allow her body to rest and recuperate. By the third day after she should start looking more normal: swelling should be gone, medicines and IVs should decrease, less irritability, etc. We will then need to resume all the regular baby stuff like feedings, wake time, diaper changes, holding her often and allowing her a lot of sleep.
But, oh, the beauty she will posses as she emerges like a butterfly ... it will be wonderous.
It seems she's been a different person for so long; we can't wait to get to know the real Olivia Anne.
She will be sedated for at least one day afterwards to allow her body to rest and recuperate. By the third day after she should start looking more normal: swelling should be gone, medicines and IVs should decrease, less irritability, etc. We will then need to resume all the regular baby stuff like feedings, wake time, diaper changes, holding her often and allowing her a lot of sleep.
But, oh, the beauty she will posses as she emerges like a butterfly ... it will be wonderous.
It seems she's been a different person for so long; we can't wait to get to know the real Olivia Anne.
Friday, September 08, 2006
Friday Update
After all the specialists and surgeons met today, they let us know that their timetable has changed, which is to be expected in the medical world. Instead of doing the heart catheterization, they will just do the shunt surgery on Monday.
They know she needs the shunt, but the cath was in order to answer questions that have to do with the two open heart surgeries, so it can wait. She’ll get it before the second surgery.
We are at the Hospital now and will spend the night here. We have a 7AM meeting with the surgeon (Lofland) tomorrow. “Late to bed and early to rise gives everyone bags under their eyes.”
As a follow-up to the Doctor-ese, here’s a link to Cincinnati’s Children’s Hospital. It’s a great explanation of what Olivia is going through, complete with a flash movie or illustrated summary. Interesting stuff.
They know she needs the shunt, but the cath was in order to answer questions that have to do with the two open heart surgeries, so it can wait. She’ll get it before the second surgery.
We are at the Hospital now and will spend the night here. We have a 7AM meeting with the surgeon (Lofland) tomorrow. “Late to bed and early to rise gives everyone bags under their eyes.”
As a follow-up to the Doctor-ese, here’s a link to Cincinnati’s Children’s Hospital. It’s a great explanation of what Olivia is going through, complete with a flash movie or illustrated summary. Interesting stuff.
Thursday Night Olivia Update
I don't want to use the term stable because it insinuates she is fine. However, she is stabilized in that she is not fine, but in a controlled environment and being cared for.
She's on some medicine (prostaglandin, or "prostin" in the biz) that makes her feel flu-ish even though she doesn't have the flu. She has waves of heat and chills, irritability (she's getting a bad rep in the ward), her appetite comes and goes, and stuff like that.
It's not fun to see her like this, and I can't say I understand why they were doing this to her, so I (nicely) grilled them with one main issue: give me a list of pros that outweigh the cons of just going ahead with the surgery. Why is it necessary to make her feel terrible and put off the inevitable?
Their answers:
—Her strength will increase noticeably in the next few days.
—Recovery will be faster and more assured once she has more meat on her bones and an established feeding pattern.
—Her little body (organs, arteries, etc.) will decompress and become more pliable compared to the "scrunched womb state" she has been in.
—This will allow the surgeons to be more successful with manipulating her plumbing.
—She is stabilized, after all, so there is no need to rush. However, if a sharp change occurs they will proceed immediately.
—Extra monitoring is helpful.
—More doctor-ese lingo (no comprendo).
There are probably a few more.
Plan of Action
—All the surgeons and specialists have their weekly meeting Friday morning. They will discuss Olivia and come to a consensus. More brains = better outcome ... or something.
—The heart catheterization will happen soon, but the dates keep changing.
—The shunt will be put in soon after the cath is done.
—Recovery will be 10–14 days. After the third day we will know more closely how long recovery will take.
—She comes home after that. I'm sure we'll get more info on that later.
—At some indefinite time later (months? years?), she will have at least two major open heart surgeries to give her bigger arteries. Her body will tell us when that needs to happen.
—After that, she should be closer to "normal" than ever before, but never 100%.
What am I saying?!?! I'm not leaving any room for God in all this.
Wow. Let's try something else...
—God can heal her.
—We would like to see her healed.
—We are praying for God's creative miracle in her heart and respiratory system.
—We'll switch gears and pray for all the surgery stuff if that needs to happen, but until then, it's all God.
Create in her a new heart and restore something steadfast within her.
She's on some medicine (prostaglandin, or "prostin" in the biz) that makes her feel flu-ish even though she doesn't have the flu. She has waves of heat and chills, irritability (she's getting a bad rep in the ward), her appetite comes and goes, and stuff like that.
It's not fun to see her like this, and I can't say I understand why they were doing this to her, so I (nicely) grilled them with one main issue: give me a list of pros that outweigh the cons of just going ahead with the surgery. Why is it necessary to make her feel terrible and put off the inevitable?
Their answers:
—Her strength will increase noticeably in the next few days.
—Recovery will be faster and more assured once she has more meat on her bones and an established feeding pattern.
—Her little body (organs, arteries, etc.) will decompress and become more pliable compared to the "scrunched womb state" she has been in.
—This will allow the surgeons to be more successful with manipulating her plumbing.
—She is stabilized, after all, so there is no need to rush. However, if a sharp change occurs they will proceed immediately.
—Extra monitoring is helpful.
—More doctor-ese lingo (no comprendo).
There are probably a few more.
Plan of Action
—All the surgeons and specialists have their weekly meeting Friday morning. They will discuss Olivia and come to a consensus. More brains = better outcome ... or something.
—The heart catheterization will happen soon, but the dates keep changing.
—The shunt will be put in soon after the cath is done.
—Recovery will be 10–14 days. After the third day we will know more closely how long recovery will take.
—She comes home after that. I'm sure we'll get more info on that later.
—At some indefinite time later (months? years?), she will have at least two major open heart surgeries to give her bigger arteries. Her body will tell us when that needs to happen.
—After that, she should be closer to "normal" than ever before, but never 100%.
What am I saying?!?! I'm not leaving any room for God in all this.
Wow. Let's try something else...
—God can heal her.
—We would like to see her healed.
—We are praying for God's creative miracle in her heart and respiratory system.
—We'll switch gears and pray for all the surgery stuff if that needs to happen, but until then, it's all God.
Create in her a new heart and restore something steadfast within her.
For the Info-Minded
For those of you who want some real details (“I have questions … I want info … Yes, I read instruction manuals…”) this post is for you. The rest of you can skip it and go to the next post. Here is some doctor-ese we have been hearing lately. This is for informational purposes and may not be 100% accurate; I’m not a medical professional, but it’s the best I can gather without Googling everything ad nauseum.
Septum — A separation within the body. It has nothing to do with an old metal tank next to an older house.
Ventricle — One of the two lower chambers within the heart, the Right and Left Ventricle. The LV circulates blood from the lungs to the heart where it picks up oxygen and gets pumped throughout the body. The blood then returns to the RV which circulates blood from the heart to the body again, and returns to the lungs to make a new run. It’s a big figure eight. The two upper chambers are called Atriums. Blood enters the heart through the atriums (like the foyer of a house) and exits through the ventricles.
Ventricular Septal Defect (VSD) — A hole between the two ventricles. In Olivia’s case, the middle wall between the left and right ventricle is almost non-existent; about three-quarters of the middle wall did not form. This makes the blood slosh back and forth between both ventricles and become diluted instead of being pumped throughout the body like normal.
Murmur — When blood sloshes back and forth between both ventricles. This was the first indication that Olivia may have further complications.
Oxygen Saturation — The amount of oxygen within the bloodstream. For Olivia, this number (usually 95–100% in a normal person) has been steadily decreasing each day, and it drops sharply quite often for a few seconds or several minutes.
Desaturation — When the amount of oxygen within the bloodstream makes a sharp drop. Depending on additional signs, this could mean bigger problems.
Pulmonary — Having to do with the lungs and respiratory system.
Hypertension — Pressure. Pulmonary hypertension, then, would be pressure on the lungs or respiratory system.
Cardia — Having to do with the heart system (cardiac, cathartic, etc.).
Catheter — Any tube inserted into the body, but each one has a different purpose: investigation (testing), insertion (putting stuff in) or excavation (getting stuff out).
Cardiac Catheterization — Testing the heart by using a tube designed to gather information: volume of blood the heart pumps, diameter and length of arteries and veins, location of main aortas, location and extent of the VSD, etc. This will probably be accompanied with injecting a dye into the bloodstream so they can map out what it looks like in there.
Apnea — To stop breathing momentarily. Olivia has this as a side effect of one of the medicines she is being given. It’s a bit unsettling when you are holding her.
EKG/ECG — Electrocardiogram: a test that measures the electrical activity of the heartbeat and shows it with real-time pictures. It’s just like a sonogram for seeing a baby in the mother’s womb. Black and white is still classy, right?
Shunt — An artificial artery (made out of Gortex or Dacron usually). Olivia’s shunt will go from the pulmonary artery to the heart so more oxygenated blood gets pumped throughout her body.
Homograft — A donated body part from another human that will be surgically grafted in. For Olivia, she may be given a donated artery in a few years.
Open Heart Surgery — Surgery that consists of stopping the heart, placing the patient on a machine to keep her alive, working on the heart, replacing it in her body, and restarting her heart. It is now a common surgery, but has the risks you’re thinking of. Getting the shunt is not open heart, but the following two surgeries (and maybe more) are.
Septum — A separation within the body. It has nothing to do with an old metal tank next to an older house.
Ventricle — One of the two lower chambers within the heart, the Right and Left Ventricle. The LV circulates blood from the lungs to the heart where it picks up oxygen and gets pumped throughout the body. The blood then returns to the RV which circulates blood from the heart to the body again, and returns to the lungs to make a new run. It’s a big figure eight. The two upper chambers are called Atriums. Blood enters the heart through the atriums (like the foyer of a house) and exits through the ventricles.
Ventricular Septal Defect (VSD) — A hole between the two ventricles. In Olivia’s case, the middle wall between the left and right ventricle is almost non-existent; about three-quarters of the middle wall did not form. This makes the blood slosh back and forth between both ventricles and become diluted instead of being pumped throughout the body like normal.
Murmur — When blood sloshes back and forth between both ventricles. This was the first indication that Olivia may have further complications.
Oxygen Saturation — The amount of oxygen within the bloodstream. For Olivia, this number (usually 95–100% in a normal person) has been steadily decreasing each day, and it drops sharply quite often for a few seconds or several minutes.
Desaturation — When the amount of oxygen within the bloodstream makes a sharp drop. Depending on additional signs, this could mean bigger problems.
Pulmonary — Having to do with the lungs and respiratory system.
Hypertension — Pressure. Pulmonary hypertension, then, would be pressure on the lungs or respiratory system.
Cardia — Having to do with the heart system (cardiac, cathartic, etc.).
Catheter — Any tube inserted into the body, but each one has a different purpose: investigation (testing), insertion (putting stuff in) or excavation (getting stuff out).
Cardiac Catheterization — Testing the heart by using a tube designed to gather information: volume of blood the heart pumps, diameter and length of arteries and veins, location of main aortas, location and extent of the VSD, etc. This will probably be accompanied with injecting a dye into the bloodstream so they can map out what it looks like in there.
Apnea — To stop breathing momentarily. Olivia has this as a side effect of one of the medicines she is being given. It’s a bit unsettling when you are holding her.
EKG/ECG — Electrocardiogram: a test that measures the electrical activity of the heartbeat and shows it with real-time pictures. It’s just like a sonogram for seeing a baby in the mother’s womb. Black and white is still classy, right?
Shunt — An artificial artery (made out of Gortex or Dacron usually). Olivia’s shunt will go from the pulmonary artery to the heart so more oxygenated blood gets pumped throughout her body.
Homograft — A donated body part from another human that will be surgically grafted in. For Olivia, she may be given a donated artery in a few years.
Open Heart Surgery — Surgery that consists of stopping the heart, placing the patient on a machine to keep her alive, working on the heart, replacing it in her body, and restarting her heart. It is now a common surgery, but has the risks you’re thinking of. Getting the shunt is not open heart, but the following two surgeries (and maybe more) are.
Not the Only Ones
We are not the only ones in our part of the world with the need for a creative miracle from God. Pray for Wes and Amanda Martin. They are pregnant with twins (about 26 weeks along, give or take) who are not doing very well. I don't have details at the moment, but whispering their name to God is enough to turn His face toward them.
Thursday, September 07, 2006
Peace and Rest
God makes ways for me to rest in the smooth meadow grass.
Come to Me and I will give you rest—all of you who work so hard under every kind of heaviness.
Rest in the Lord.
Christ has already entered there. He is resting from His work, just as God did after the creation.
Do not be attracted by strange, new ideas. Your spiritual strength comes as a gift from God.
Then we will no longer be like immature children, forever changing or minds about what we believe because someone has told us something different, or has cleverly lied to us and made the lie sound like the truth. Instead we will lovingly follow the truth at all times—speaking truly, dealing truly, living truly—and so become more and more in every way like Jesus who is the head of His Body, the Church.
I am seated in His much-desired shade and His fruit is lovely to eat. He brings me to the banquet hall and everyone can see how much He loves me.
Come to Me and I will give you rest—all of you who work so hard under every kind of heaviness.
Rest in the Lord.
Christ has already entered there. He is resting from His work, just as God did after the creation.
Do not be attracted by strange, new ideas. Your spiritual strength comes as a gift from God.
Then we will no longer be like immature children, forever changing or minds about what we believe because someone has told us something different, or has cleverly lied to us and made the lie sound like the truth. Instead we will lovingly follow the truth at all times—speaking truly, dealing truly, living truly—and so become more and more in every way like Jesus who is the head of His Body, the Church.
I am seated in His much-desired shade and His fruit is lovely to eat. He brings me to the banquet hall and everyone can see how much He loves me.
Wednesday, September 06, 2006
He Will Come
Don't be impatient. Wait for the Lord and He will come and save you. Be brave, stout-hearted and courageous.
Don't you yet understand? Don't you know by now that the everlasting God, the creator of the farthest parts of the earth, never grows faint or weary? He gives power to the tired and worn out, and strength to the weak.
Fear not, for I am with you. Do not be dismayed. I am your God. I will strengthen you; I will help you; I will uphold you with My victorious, righteous right hand.
To the poor, oh Lord, You are a refuge from the storm, a shadow from the heat, a shelter...
When the way is rough, your patience has a chance to grow. So let it grow, and don't try to squirm out of your problems; they are always invitations from Him. When your patience is finally in full bloom, then you will be ready for anything, strong in character, full and complete.
Do not let your happy trust in the Lord wither away, no matter what happens. Remember your reward! Keep on patiently doing God's will and He will do all that He has promised for you. His coming will not be delayed much longer.
Don't you yet understand? Don't you know by now that the everlasting God, the creator of the farthest parts of the earth, never grows faint or weary? He gives power to the tired and worn out, and strength to the weak.
Fear not, for I am with you. Do not be dismayed. I am your God. I will strengthen you; I will help you; I will uphold you with My victorious, righteous right hand.
To the poor, oh Lord, You are a refuge from the storm, a shadow from the heat, a shelter...
When the way is rough, your patience has a chance to grow. So let it grow, and don't try to squirm out of your problems; they are always invitations from Him. When your patience is finally in full bloom, then you will be ready for anything, strong in character, full and complete.
Do not let your happy trust in the Lord wither away, no matter what happens. Remember your reward! Keep on patiently doing God's will and He will do all that He has promised for you. His coming will not be delayed much longer.
Thank You
I wanted to write something to express our thanks. I just don't know how to say what's going on inside.
There are so many friends and so many who care, we are simply overwhelmed with gratitude.
IHOP-KC
The NightWatch
ZHOP in the Carolinas
Melbourne, Australia
Friends & fam on E & W coast
Friends visiting us in various waiting rooms and ICUs
Lone intercessors from all over
Small and large prayer chains dotting the time zones with hope
You bring us before the Almighty.
You uphold us in our lack.
You encourage us with your simple steadfastness.
There have been answers to your prayers already, in something as simple as wise counsel finding us.
You matter.
You who make mention of His name, give Him no rest.
Thank you.
There are so many friends and so many who care, we are simply overwhelmed with gratitude.
IHOP-KC
The NightWatch
ZHOP in the Carolinas
Melbourne, Australia
Friends & fam on E & W coast
Friends visiting us in various waiting rooms and ICUs
Lone intercessors from all over
Small and large prayer chains dotting the time zones with hope
You bring us before the Almighty.
You uphold us in our lack.
You encourage us with your simple steadfastness.
There have been answers to your prayers already, in something as simple as wise counsel finding us.
You matter.
You who make mention of His name, give Him no rest.
Thank you.
Tuesday, September 05, 2006
Surgery Pronto
Olivia has worsened.
As of about 8PM Tuesday night, she has been taken to Children's Mercy in downtown KC. We are tucking the girls in bed and will meet Olivia there after her in-processing.
She will have a heart catheterization (litany of tests) within the next day or two at most, and 24 hours later will have surgery.
The surgery will put in a BT Shunt, which is a massive artificial vein between the lungs and heart to help give her more oxygenated blood.
Pray for her. Thanks.
As of about 8PM Tuesday night, she has been taken to Children's Mercy in downtown KC. We are tucking the girls in bed and will meet Olivia there after her in-processing.
She will have a heart catheterization (litany of tests) within the next day or two at most, and 24 hours later will have surgery.
The surgery will put in a BT Shunt, which is a massive artificial vein between the lungs and heart to help give her more oxygenated blood.
Pray for her. Thanks.
Monday, September 04, 2006
Amy and Olivia
A few pictures of the beautiful baby girl and the proud mom.
I will give an adequate update as soon as I have some decent time. Suffice it to say that Olivia may or may not be coming home this week, but that is dependent on a number of things that have rapidly changed over the past two days.
Her condition (Tetralogy of Fallot with double-outlet RV ... I could explain it, but it would take at least two whiteboards) may be more easily operable than the initial diagnosis.
She will need open heart surgery still. Several surgeries throughout the first five years of life, and maybe more later on.
She will live with the heart/oxygen/lung problem for a few months and be in need of our constant and vigorous attention until surgery can occur, at which time she will be more "normal-ish" than if she got the Fontan surgeries (previous post).
Or God can do a creative miracle. He can create in her a new heart and renew something steadfast within her. We're praying for this one.
I will give an adequate update as soon as I have some decent time. Suffice it to say that Olivia may or may not be coming home this week, but that is dependent on a number of things that have rapidly changed over the past two days.
Her condition (Tetralogy of Fallot with double-outlet RV ... I could explain it, but it would take at least two whiteboards) may be more easily operable than the initial diagnosis.
She will need open heart surgery still. Several surgeries throughout the first five years of life, and maybe more later on.
She will live with the heart/oxygen/lung problem for a few months and be in need of our constant and vigorous attention until surgery can occur, at which time she will be more "normal-ish" than if she got the Fontan surgeries (previous post).
Or God can do a creative miracle. He can create in her a new heart and renew something steadfast within her. We're praying for this one.
Friday, September 01, 2006
Update On Olivia
Since the last post, things have gotten pretty bad for Olivia. At the moment she is in the Neonatal Intensive Care Unit (NICU) so she can be monitored.
She has several heart defects which were not noticeable until her second day in this world, but were (thankfully) discovered before we were discharged from the hospital.
Here's the basic rundown:
—Instead of having two chambers like a normal heart, Olivia's heart only has one. It's the same size as a normal heart, but the chambers (ventricles) never formed completely. This is common and sometimes the body will finish the job, but the gap seems to be too large for her body to finish creating the chamber wall.
—This means that, while one chamber would be used for oxygenated blood and the other for non-oxygenated blood, her heart simply mixes the two in the one large chamber and puts it back out to the body again, lacking what it needs.
—She has a lack of oxygen in her blood. As blood travels throughout your body, it takes oxygen as fuel and "life" to each cell. The organs take the oxygen they need and the blood goes back to the lungs to pick up more oxygen, then to the heart to get pumped out again. So if your blood starts out as 90% oxygen (most people's blood does), it will return with about 65% oxygen since it has been used.
—But if it starts out at about 65%, it will return with about 40% oxygen. The blood is only "40% saturated with oxygen" (or 60% de-saturated), which is not good.
—Another issue is that the main aorta (vein) from her heart to her lungs should be about 10mm in diameter. Olivia's is about 3mm in diameter, causing her to only be pumping 30% at a time through the lungs to get oxygen. Translation: she is only getting 30% of the oxygen into her bloodstream that she needs to function.
—This isn't a problem when she is resting. It becomes a problem when she gets fussy or worked up for whatever reason (hungry, tired, "don't mess with me right now," etc.). As she cries, her heart starts racing and her body prepares for a rush of blood throughout her body in response to her expending a ton of energy. But the amount of oxygen in her blood drops drastically due to everything just mentioned (one chamber, abnormal aorta, etc.). She tends to turn blue and lose her breath because of this.
—If she gets into a panicked cycle like this it could be quite dangerous.
—We will possibly need to move her to a Children's hospital within the next few days.
So what are the options?
1). Allow her body to stabilize, keep her calm at all times and bring her home. This will only happen in conjunction with one of the following things:
2). Administer prostaglandin on an hourly basis, a medicine that will temporarily cause the constricted vein to open up a little.
3). Perform the first of three heart surgeries within the week. The first phase inserts an artificial vein between the lungs and heart. This would solve or at least delay the "not enough oxygenated blood" problem. But it also has side effects and a list of pros (no hampered breathing, good oxygenation...) and cons (clot, stroke, or worse).
4). The second phase would happen when she is between six and twelve months old, and the third phase would happen between three and six years old. Together these phases would create a new aorta between the lungs and heart that would make her practically normal. She may have to take some medicine, but hopefully not a lot. And she certainly wouldn't be running any Olympic marathons. But in all other respects she would be normal. [We do not yet know whether our MC+ insurance will cover any of the surgeries.]
What are we asking for?
1). Firstly, a miracle. We would love to see God do a creative miracle and give Olivia two normal chambers and a normal aorta. This is our primary prayer, and we would love it if you would agree with us in prayer on this primary point.
2). Faith in God. I sat here for twenty minutes thinking of everything I want to say about this, but the bottom line is that He is good and He is able.
3). Wisdom with the choices. There's lots to sift through, and, if you can believe it, this is the condensed version. We need wisdom.
4). Good counsel. Making a good choice based on bad info doesn't help.
5). Medical personnel. That God would bless them and guide them as they care for Olivia, and, if it comes to it, that He would guide them as they perform surgery.
6). Peace. It is a stabilizer and a guide in the fog. Satan's kingdom is a kingdom of unrest. But the person who makes the Lord their Refuge will have Him and the Spirit of Peace as their reward.
7). Your prayers. He moves at the sound of our voice because of His love for us. I invite you to join with me in overwhelming His heart with our affection so that He "strides forth in the glory of His strength". What will He do because of our love? Will He heal our little girl? Would He rise up as the Conqueror against the kingdom of unrest? We believe He will. Join us.
8). Logistics. If you are the kind of person who likes helping with logistical things (transportation, meals, etc.), we may have some opportunities pop up. I can't think of anything at the moment, but we just don't know what's coming around the corner.
Thank you for all your prayers, phone calls, flowers, words of encouragement, prayers, visits, babysitting, coffee, food, and prayers. And especially your prayers. We have been overwhelmed with your friendship and care. Thank you.
Josh, Amy, Kayla-Marie, Madeline and Olivia
The Farmer Tribe
She has several heart defects which were not noticeable until her second day in this world, but were (thankfully) discovered before we were discharged from the hospital.
Here's the basic rundown:
—Instead of having two chambers like a normal heart, Olivia's heart only has one. It's the same size as a normal heart, but the chambers (ventricles) never formed completely. This is common and sometimes the body will finish the job, but the gap seems to be too large for her body to finish creating the chamber wall.
—This means that, while one chamber would be used for oxygenated blood and the other for non-oxygenated blood, her heart simply mixes the two in the one large chamber and puts it back out to the body again, lacking what it needs.
—She has a lack of oxygen in her blood. As blood travels throughout your body, it takes oxygen as fuel and "life" to each cell. The organs take the oxygen they need and the blood goes back to the lungs to pick up more oxygen, then to the heart to get pumped out again. So if your blood starts out as 90% oxygen (most people's blood does), it will return with about 65% oxygen since it has been used.
—But if it starts out at about 65%, it will return with about 40% oxygen. The blood is only "40% saturated with oxygen" (or 60% de-saturated), which is not good.
—Another issue is that the main aorta (vein) from her heart to her lungs should be about 10mm in diameter. Olivia's is about 3mm in diameter, causing her to only be pumping 30% at a time through the lungs to get oxygen. Translation: she is only getting 30% of the oxygen into her bloodstream that she needs to function.
—This isn't a problem when she is resting. It becomes a problem when she gets fussy or worked up for whatever reason (hungry, tired, "don't mess with me right now," etc.). As she cries, her heart starts racing and her body prepares for a rush of blood throughout her body in response to her expending a ton of energy. But the amount of oxygen in her blood drops drastically due to everything just mentioned (one chamber, abnormal aorta, etc.). She tends to turn blue and lose her breath because of this.
—If she gets into a panicked cycle like this it could be quite dangerous.
—We will possibly need to move her to a Children's hospital within the next few days.
So what are the options?
1). Allow her body to stabilize, keep her calm at all times and bring her home. This will only happen in conjunction with one of the following things:
2). Administer prostaglandin on an hourly basis, a medicine that will temporarily cause the constricted vein to open up a little.
3). Perform the first of three heart surgeries within the week. The first phase inserts an artificial vein between the lungs and heart. This would solve or at least delay the "not enough oxygenated blood" problem. But it also has side effects and a list of pros (no hampered breathing, good oxygenation...) and cons (clot, stroke, or worse).
4). The second phase would happen when she is between six and twelve months old, and the third phase would happen between three and six years old. Together these phases would create a new aorta between the lungs and heart that would make her practically normal. She may have to take some medicine, but hopefully not a lot. And she certainly wouldn't be running any Olympic marathons. But in all other respects she would be normal. [We do not yet know whether our MC+ insurance will cover any of the surgeries.]
What are we asking for?
1). Firstly, a miracle. We would love to see God do a creative miracle and give Olivia two normal chambers and a normal aorta. This is our primary prayer, and we would love it if you would agree with us in prayer on this primary point.
2). Faith in God. I sat here for twenty minutes thinking of everything I want to say about this, but the bottom line is that He is good and He is able.
3). Wisdom with the choices. There's lots to sift through, and, if you can believe it, this is the condensed version. We need wisdom.
4). Good counsel. Making a good choice based on bad info doesn't help.
5). Medical personnel. That God would bless them and guide them as they care for Olivia, and, if it comes to it, that He would guide them as they perform surgery.
6). Peace. It is a stabilizer and a guide in the fog. Satan's kingdom is a kingdom of unrest. But the person who makes the Lord their Refuge will have Him and the Spirit of Peace as their reward.
7). Your prayers. He moves at the sound of our voice because of His love for us. I invite you to join with me in overwhelming His heart with our affection so that He "strides forth in the glory of His strength". What will He do because of our love? Will He heal our little girl? Would He rise up as the Conqueror against the kingdom of unrest? We believe He will. Join us.
8). Logistics. If you are the kind of person who likes helping with logistical things (transportation, meals, etc.), we may have some opportunities pop up. I can't think of anything at the moment, but we just don't know what's coming around the corner.
Thank you for all your prayers, phone calls, flowers, words of encouragement, prayers, visits, babysitting, coffee, food, and prayers. And especially your prayers. We have been overwhelmed with your friendship and care. Thank you.
Josh, Amy, Kayla-Marie, Madeline and Olivia
The Farmer Tribe
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