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The perfect Christmas gift—our family, together at last. We couldn't have asked for more.
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Corban is 3 months old today. I was able to "kangaroo care" him for the first time AND give him a tiny bit of milk this afternoon. :) It was a very good day.
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Hmm... what to say? It's hard to know how Corban is doing some days. The doctor pulled a good amount of fluid off his right lung today, so Corban's ventilator settings were decent tonight. That's good.
But lately he's been getting "mad," they say. He'll clamp down and drop his heart rate and oxygen levels dangerously low. When he does that they have to give him morphine, so that he'll calm down and breathe.
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We are thinking and praying about taking Corban up to Philadelphia for his orthopedic care, when he gets out of the NICU. There's a doctor up there who specializes in AMC (arthrogryposis multiplex congenita). May God make it clear to us and make a way for us, if that's what He wants of us.
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Exciting news... Corban is OFF the ventilator! Hard to believe, but such a nice surprise. Hoping he stays off. :) It is CRAZY to hear his voice for the first time!
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Together at Last
Swallow Study
Later...
Corban did superb on his swallow study! He did everything perfectly. His nurse said she almost cried as she was so proud of him. The speech therapist is coming tomorrow morning and they are going to try giving him a bottle. Hoping he does it. That would be completely wonderful!
Not Ready for This
Corban was doing well tonight, although he is running a fever now. They are doing a blood culture to see if he has an infection. They went ahead and started him on antibiotics though, as a precautionary measure.
He was doing so well this week! I'm not ready for this again.
He was doing so well this week! I'm not ready for this again.
We Almost Lost Him
Corban could have died this morning. He wasn't handling being off the ventilator very well and spent most of the night crying. This morning, he dropped his heart rate and oxygen levels drastically low and even with chest compressions/bagging, he wouldn't come back up. The nurses thought for sure they had lost him. It took two rounds of EPI (epinephrine) to jump start his heart before he finally came back.
Thinking about this verse from Job today:
"For hardship does not spring from the soil,
nor does trouble sprout from the ground.
Yet man is born to trouble as surely as sparks fly upward." -Job 5:6-7
Corban is one who has been born to trouble. He's suffered more in his first 3 months of life, than many of us will ever experience in a lifetime. Praying the Lord has mercy and heals his little body soon. May God give us years of joy together after these months of sorrow.
Thinking about this verse from Job today:
"For hardship does not spring from the soil,
nor does trouble sprout from the ground.
Yet man is born to trouble as surely as sparks fly upward." -Job 5:6-7
Corban is one who has been born to trouble. He's suffered more in his first 3 months of life, than many of us will ever experience in a lifetime. Praying the Lord has mercy and heals his little body soon. May God give us years of joy together after these months of sorrow.
Off the Vent Tonight
I'm so excited! Corban is off the ventilator right now. Can't wait to get to the hospital! Oh, to hear him cry again! Never have I been so excited to hear a baby cry.
Holding Corban Upright
I got to hold Corban upright again today. Really, that's the 2nd time he's ever been in a vertical position (since he was born). Yesterday was the 1st.
He definitely did better with it today than he did yesterday. It takes him a while to get adjusted as he gets very worked up, drops his heart rate and sweats up a tropical storm. But once he got settled today, he snuggled for a good hour and a half!
He definitely did better with it today than he did yesterday. It takes him a while to get adjusted as he gets very worked up, drops his heart rate and sweats up a tropical storm. But once he got settled today, he snuggled for a good hour and a half!
Corban and Mommy Kangaroo Care
Corban is 3 months old today. I was able to "kangaroo care" him for the first time AND give him a tiny bit of milk this afternoon. :) It was a very good day.
First Time On His Belly
Corban finally got to be on his belly today! Considering he's been on his back every day since he was born, this is quite a change for him. But he loves it!
The "Family Meeting"
Having a meeting today at 1 o'clock with a dozen+ medical professionals (the NICU doctors, the OB, the surgeon, the nutritionist, Corban's nurses, and a few others). Pray God gives us the wisdom of kings. We desperately need some clarity and direction for our little guy!
Later...
The meeting was intimidating for sure, but I also felt like God was with us. We were able to follow the discussion, and not get lost in all the medical terminology, which is a feat of its own. I don't know that I'd say we have any clear answers about Corban's condition and how to treat it, but at least everyone is now on the same page regarding his care. And we are still unsure how it will end for Corban. There are many things that hang in the balance. But overall the meeting was a success.
I know everyone wants to know when he'll get to come home. That really depends on whether the fluid on his lungs dries up or not. We won't have a clue until then. But we are praying hard that it dries up soon! There really aren't any good surgical options for him, so right now we are just waiting.
The problem is, when we feed him, he produces more fluid on his lungs. So, he is being fed with IV nutrition right now. But long term use of IV nutrition can damage his liver, and it's starting to show the effects of that. So, we really need the Lord to intervene and heal him.
Mom's Know Stuff Too!
Corban was not having a good day today. He was struggling to breathe and very fussy. When talking with the doctor, he said Corban's x-ray looked fine this morning. I insisted that Corban was NOT ok and that something was definitely wrong.
The doctor got another x-ray at 5 o'clock tonight, and was surprised that, after 36 hours of Corban's x-ray looking the same, this one showed fluid accumulating on his right lung! He ended up pulling off 120 ml. of fluid (which is a lot of fluid)!
So, in the words of my friend, Tonya, "mom's know stuff too!" :)
The doctor got another x-ray at 5 o'clock tonight, and was surprised that, after 36 hours of Corban's x-ray looking the same, this one showed fluid accumulating on his right lung! He ended up pulling off 120 ml. of fluid (which is a lot of fluid)!
So, in the words of my friend, Tonya, "mom's know stuff too!" :)
Limp, in My Arms
I was holding Corban today when he had one of his "clamping down" episodes. He started to cry, but was sucking in heavily and struggling to breathe. One minute he was crying and the next minute he dropped his heart rate to 30 bpm and went limp in my arms. Such a scary feeling. His heart rate is normally in the 120s, so 30 is dangerously low. Basically, he was on the way to flat lining.
Determined to Hold Him
I got to hold Corban for 2 hours today! It was hard to believe when I looked at the clock. It seemed like only 10 minutes! But it was wonderful. Completely wonderful. So I have determined to try to hold him every day (if at all possible) 'cause he really seems to like it! And of course, I love it.
Also, the doctor today mentioned getting a meeting set up with us + all of Corban's doctors, nurses, the surgeon and the geneticist, so we can all get on the same page regarding his care. THAT would be simply amazing.
Also, the doctor today mentioned getting a meeting set up with us + all of Corban's doctors, nurses, the surgeon and the geneticist, so we can all get on the same page regarding his care. THAT would be simply amazing.
Clamping Down
Hmm... what to say? It's hard to know how Corban is doing some days. The doctor pulled a good amount of fluid off his right lung today, so Corban's ventilator settings were decent tonight. That's good.
But lately he's been getting "mad," they say. He'll clamp down and drop his heart rate and oxygen levels dangerously low. When he does that they have to give him morphine, so that he'll calm down and breathe.
A Day in the NICU Life
A day in my life at the NICU...
Corban's night nurse said he was "very, very, very sick" and sounded like he wasn't going to make it through the night. Then his day nurse said "he had a good morning, was stable and resting well." Then the doctor came in, said Corban was not doing well and would need surgery today, if possible. Then the surgeon came in and said Corban didn't need surgery and that he was "doing remarkably well." So, if you can't find me these days, look for me in the looney bin!
Corban's night nurse said he was "very, very, very sick" and sounded like he wasn't going to make it through the night. Then his day nurse said "he had a good morning, was stable and resting well." Then the doctor came in, said Corban was not doing well and would need surgery today, if possible. Then the surgeon came in and said Corban didn't need surgery and that he was "doing remarkably well." So, if you can't find me these days, look for me in the looney bin!
God's Grace is Greater
Thank you all for praying for Corban. Last night was rough. We were scared of losing him. But God's grace is greater than the darkest of fears.
Corban is doing better today. The surgeon took the broviac line out of his chest and put in a femoral line. The hope is that it will cause the swelling in his head to decrease and give him some relief. We are praying this will be a giant step on the road to recovery.
Corban is doing better today. The surgeon took the broviac line out of his chest and put in a femoral line. The hope is that it will cause the swelling in his head to decrease and give him some relief. We are praying this will be a giant step on the road to recovery.
He's NOT Doing Well
Corban is not doing well, again. He's been very irritable lately. When he cries, he "clamps down," drops his heart rate and turns blue. His ventilator settings are the highest they've ever been, which is not a good sign.
So, pray for him in Jesus' name. He alone can heal. He alone can save.
So, pray for him in Jesus' name. He alone can heal. He alone can save.
Pneumonia?
Alright you prayer warriors out there... we need you again.
Corban is not doing very well tonight. The oxygen level in his blood is way too low. They've had to increase his ventilator a significant amount today. Either the fluid on his lungs is re-accumulating and they just can't see it on the x-ray yet, or he has something else going on, like pneumonia.
Corban is not doing very well tonight. The oxygen level in his blood is way too low. They've had to increase his ventilator a significant amount today. Either the fluid on his lungs is re-accumulating and they just can't see it on the x-ray yet, or he has something else going on, like pneumonia.
No Chest Tubes
No chest tubes since Monday. I am holding my breath.
I'm scared to be too elated, but still praising God for the good news this week, especially after facing possible surgery last week! There is still a chance that the tubes might come back, but there's also a chance they won't. That. Would. Be. Awesome.
I'm scared to be too elated, but still praising God for the good news this week, especially after facing possible surgery last week! There is still a chance that the tubes might come back, but there's also a chance they won't. That. Would. Be. Awesome.
Corban, a Gift Devoted to God
Regarding all the confusion about how to spell Corban's name, it's Corb-AN. I know, we are the weirdos who have to veer away from the traditional spelling and make everyone's life difficult.
When we found out we were having a boy, I couldn't think of any other name for him but Corban. The spelling is from Mark 7:11 and it means "a gift devoted to God." And that's what he is a gift devoted to God.
Head is Swollen
Corban still has no chest tubes, but his right side seems to be re-accumulating fluid. Also, his head is incredibly swollen. The doctors think it's a result of the broviac line. We are working towards getting it taken out, possibly next week.
Broviac Bad News
Bad news. The fluid on Corban's right lung is re-accumulating as a result of having the new broviac put in last Wednesday. Really? Sigh. Now, the goal is to work towards getting it taken out so it doesn't keep producing fluid. But he'll need new IV sites for that to happen. So, pray.
In My Dreams
I woke up this morning dreaming about Corban. I dreamed that I finally got him home, was holding him, and getting ready to feed him. Then a nurse came up and said, "no, actually, I was getting ready to feed him." I argued with her and said that he was my baby and "no, she couldn't have him." So, she started to angrily yank him out of my arms. I pulled him back. The dream ended with us both pulling on Corban, neither of us winning.
I have issues.
I have issues.
Another Day of Battle
Another day of battle. Not people, but medical terminology, risks, benefits, decisions. Things that are beyond us, and even beyond the doctors. Praying that we made the right choice. We really did feel that the Lord was with us though, guiding us. So, we ended up opting out of the procedure to try to repair Corban's lymph duct, and will wait another week or so to see if he improves on his own.
PLEASE everyone pray for a miracle, and that he won't have to have this procedure done! It is not pretty. The surgery would entail going up from under his ribcage, compressing his lung, possibly injuring his lung, probably breaking his ribs, just to possibly fix the possible problem. If his fluid improves this week, then we won't have to consider this painful procedure.
Also, the broviac line went in well, with no complications to speak of. Now that he's out of IV sites, he really needed this central IV line to deliver his pain meds, antibiotics and nutritional supplements. His electrolytes are all messed up and it's a constant battle to keep his sodium, potassium and calcium levels at a safe level. Also, he is battling a bacterial infection, so he's on another round of antibiotics. He's got a lot going on in that little body of his. Pray to the Great Physician for our baby boy!
Surgery Scheduled
Corban is 2 months old today. It's been such a long 2 months. He has an IV site in his knee right now and we're praying that holds until tomorrow. They are completely out of options. Yesterday, the nurses had to stick him 14 times before they could get an IV site that worked!
So, surgery is scheduled for tomorrow at 1:30pm. The surgeon will put in another broviac central IV line and will also check to see if Corban's main lymph duct has been injured. If it is, he'll have to determine if it's fixable and possibly perform surgery on it tomorrow.
So, surgery is scheduled for tomorrow at 1:30pm. The surgeon will put in another broviac central IV line and will also check to see if Corban's main lymph duct has been injured. If it is, he'll have to determine if it's fixable and possibly perform surgery on it tomorrow.
The "You Can'ts"
If all you hear all day is "you can't", you start to believe it. "You can't stand there, you can't park there, you can't touch that, you can't do that, you can't hold him, you can't touch him, you can't have him, you can't you can't you can't." So tired of the "you can'ts"!
The Warfare is Long
"And when the strife is fierce, the warfare long,
steals on the ear the distant triumph song,
and hearts are brave again, and arms are strong.
Alleluia, Alleluia!" (from the song, "For All the Saints")
The warfare is long right now. I need a brave heart and strong arms.
steals on the ear the distant triumph song,
and hearts are brave again, and arms are strong.
Alleluia, Alleluia!" (from the song, "For All the Saints")
The warfare is long right now. I need a brave heart and strong arms.
Out of IV Sites
We are running out of IV sites for Corban. He will probably end up needing the broviac central IV line put back in, which does not make me happy. They are also talking about trying to surgically fix the chylothorax at the same time (what might be causing the fluid on his lungs).
Pray his IV site holds long enough so they don't have to do an emergency broviac line today. That would not be pretty.
Pray his IV site holds long enough so they don't have to do an emergency broviac line today. That would not be pretty.
Ups and Downs
Is everybody still praying for Corban? He had a rough couple days and the doctor had to put a chest tube in today. Definitely feeling like it's another set back.
His head is starting to swell again AND he had to have a blood transfusion last night. I thought we were on the up and up! I don't know if I can take much more of this up and down. He's almost 2 months old. :(
His head is starting to swell again AND he had to have a blood transfusion last night. I thought we were on the up and up! I don't know if I can take much more of this up and down. He's almost 2 months old. :(
MRI Results
Corban had an MRI of his brain yesterday. They didn't see anything too unusual, except that he is incredibly smart! ;) Seriously, it came back normal, which is wonderful news. They do want to show it to a pediatric radiologist at some point though, to get an expert opinion.
Also, he is chest tube free (since Wednesday). But he is still having some fluid on his left side. He was having a really hard time breathing today because of it, so they ended up draining the fluid off with a syringe. Little by little. Inch by inch.
Also, he is chest tube free (since Wednesday). But he is still having some fluid on his left side. He was having a really hard time breathing today because of it, so they ended up draining the fluid off with a syringe. Little by little. Inch by inch.
Philadelphia?
We are thinking and praying about taking Corban up to Philadelphia for his orthopedic care, when he gets out of the NICU. There's a doctor up there who specializes in AMC (arthrogryposis multiplex congenita). May God make it clear to us and make a way for us, if that's what He wants of us.
Catching up on His ZzZzs
Corban is catching up on his sleep now that he has his own room, and doesn't have to experience quite so many obnoxious beeping noises. So thankful for this new blessing.
He still has no chest tube on his right side. Praying the left one good riddance too!
Also, docs are hoping to do an MRI of his brain by the end of the week to check his central nervous system. Really hoping it comes back normal.
He still has no chest tube on his right side. Praying the left one good riddance too!
Also, docs are hoping to do an MRI of his brain by the end of the week to check his central nervous system. Really hoping it comes back normal.
Isolation Room
Every time Corban would nod off to sleep tonight, the alarm from the baby next to him would start beeping and startle him awake. So, I prayed that the Lord would make him well so he could come home and be able to sleep! On the way home from the hospital, his nurse called me and said they were going to move him into the isolation room tonight. Wow! The Lord heard my prayer, just answered it in a way I would have never expected!
God Was Good. God Is Good.
Well, God was good on Thursday, when Corban came off the ventilator. He was good yesterday, when Corban had a chest tube taken out. And He's good today, even when Corban had a collapsed lung, had to go back on the ventilator, and had to stop his feeds.
"The Lord is GOOD, a refuge in times of trouble. He cares for those who trust in him." -Nahum 1:7
"The Lord is GOOD, a refuge in times of trouble. He cares for those who trust in him." -Nahum 1:7
Chest Tube Is Out!
Bam. Bam. Bam. More good news! The doctor took Corban's right chest tube out today!! Woo-hoo! It's been dry since Monday. SUCH good news. The left one still has some fluid, but not like it used to. Also, we started him on milk today. No more formula! I can hardly believe these last two days have brought such good news for our little boy. Thank you, Lord.
We definitely appreciate all your prayers for Corban. I think he's going to be ok. :) Now, let's pray that other chest tube out forever and those broken bones to heal!
Oh, to Hear Him Cry!
Exciting news... Corban is OFF the ventilator! Hard to believe, but such a nice surprise. Hoping he stays off. :) It is CRAZY to hear his voice for the first time!
Back to the Drawing Board
Sigh. Back to the drawing board. Corban filled up his new atrium today with 200 ml. of fluid from his left side. Removing the broviac line didn't seem to work. This is disappointing for sure. Also, we found out today that Corban's lower right leg is fractured. It looks like it happened at the same time that his femurs and left arm broke. AND we discovered that he has a recently fractured rib (from one of his chest tubes being put in). Does it ever end?
Overall, he is doing fairly well, considering all the pain he should be in. For the last 2 1/2 weeks, he's been alert, active, and looking around. So that is good news. He's up to full feeds now (using a feeding tube and low-fat formula). That was a requirement for them to take the broviac line out.
God Speaking to Me
N just showed me a card she wrote and then "read" it to me. "Dear God, I love you that you give us strength always." Felt like God was speaking to me through her.
Broviac is Out
Broviac line is out. Praying the drainage stops now.
I got to hold him today. He did beautifully, too! He didn't have his hip brace on today, but even without it, he didn't even wince when they moved him from the bed into my arms. I got to hold him for over an hour. It was completely and thoroughly wonderful.
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