2 Tsp. of Milk and Doing Well

Corban was doing surprisingly well today! When I walked in his room, he was looking around, happy as a lark. They changed his ventilator today to the less powerful one, which is a step towards weaning him off of it. Woo-hoo!

He's been getting about 2 tsp. of milk every 3 hours and doing well so far. I am holding my breath. If he's able to tolerate his feeds and not produce more fluid on his lungs, it will be the answer to all our prayers.

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!

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.

That Pesky Edema

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!" :)

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.

Daddy Loves Me Too

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.

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!

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.

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.

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.

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.

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.

Very Special Hands and Feet