Big Words and Low-Fat Formula

I'm learning big words these days. Try congenital pulmonary lymphangiectasia on for size. It's some other rare thing that Corban most likely has. They want to give him low-fat formula because of it. Not a smiley face in my book. Trying to understand the reasoning.

Later...

Corban is on the formula now, but after hours of seeking to understand it and trying to figure out if it was the best thing for him. I just didn't want to cause any further complications for him. Once you cause a permanent problem, you can't take it back. Obviously. The pressure is on to make the right choices for Corban. Praying the Lord gives us wisdom from above, because it's all over my head!

My First Time "Holding" Corban

Corban finally got his leg brace yesterday!! I can't wait to be able to hold him.

Later....

Well, not exactly what I was expecting or hoping for, but I got to "hold" him today. Maybe one day it will be in my arms.

Hip Brace

Empty Arms

This whole experience is extremely difficult for me. I feel like something is missing and it's very strange, as I'm no longer pregnant, but I don't have a baby to care for either. Sometimes I feel as though I have already lost him.

Fever of 104

Well, Corban had a fever of 104 in the middle of the night last night. He's got some kind of infection, probably bacterial (possibly in his central IV line). He's on antibiotics and seems to be doing better today. Pray he kicks this soon! Infections are the pits. Still, overall, he is doing much better than the past few weeks. Thankful for that.

One Month Old

Corban is 1 month old today! He sure had a rough start, but this week has been a good week for him. His swelling is virtually GONE. He's had less fluid on his lungs and has been getting milk the last couple of days. Praying that things just keep looking up this coming month!

A Bit of Milk

Got to feed Corban a little bit of milk today for the first time. Pray that he digests it well and can keep eating. That would make me so incredibly happy!

Only Good News

Holding my breath and hoping this week is the start of some good progress. The last few days has been only good news. Doctor said the x-ray on Corban's lungs showed less fluid today than typical, so they might try feeding him again tomorrow. His vent settings are low, he's been more active and alert, his swelling has decreased significantly and there's new bone growth on his broken bones! Praying this is not the calm before the storm! Just bright sunny weather would be nice.

"Less" Swollen

Someone Praying

Corban looked better tonight! His swelling has gone down, and he's back on the regular ventilator (instead of the big mean breathing machine). Someone must have been praying tonight!

Arthrogryposis

Corban's due date is today - he is now 3 weeks old.

The microarray (genetic test) came back and Corban tested normal. That's good news! We still don't know what caused his condition though. There's a lot of unanswered questions and lack of direction for our little guy. All we do know is that because Corban didn't move much in the womb his joints are contracted. The name to describe it is arthrogryposis. It's not an actual disease in and of itself, but a word to describe a condition. What caused it, is still a mystery

Without the Glass Cage

Corban is still very swollen. When I touched his arm tonight he winced in pain, just from the swelling. If it gives you a better idea of how swollen he is, when I went to the hospital yesterday, the nurses were trying to draw his blood. They tried for over an hour to draw blood from one of his veins. After looking for every possible place and poking him in his head a couple times, his arm and his leg, they still couldn't get it. He is so swollen they can't get to any of his veins. Pray that they can figure out what all is causing this wretched edema.

Also, he got fitted for his leg brace today. Hopefully they'll have it ready by Friday. It would definitely help with his edema, but unfortunately, I won't get to hold him until the chest tubes come out. I did, however, get to spend some time with him today, close up, and even give him a kiss or two. It was so nice to be with him without the "glass cage" between us

Lord! Help!

Corban's swelling is a little out of control. He is the most swollen that I have seen him yet. Still on the more powerful ventilator and strong pain killers. Because he can't be moved (with the broken bones, etc.) it makes it very difficult to get the swelling under control. The fluid on his lungs keeps reproducing, so that also affects his edema.

I read a story to him today about Jesus walking on the water and found myself relating to Peter... "'I cannot do it!' he thought to himself, and he began to sink. 'Lord! Help!' he cried. Jesus quickly stretched His arm and caught him. 'Peter! Peter! You thought you could not do it? Why don't you have more faith in Me?'"

Good News, Bad News

Well, there's always good news and bad news. Good news is the blood transfusion went well and his color looks better. Bad news is that his swelling has gotten to be a problem again. Good news is that the doctor noticed callouses forming on his broken bones (which means they're starting to heal). Bad news is that the fluid on his lungs isn't draining well and he keeps producing more, which can become a real problem.

Also, he had to be taken off the regular ventilator last night and put on a more powerful one. :( Pray the fluid drains soon. It puts a lot of pressure on his lungs and makes it hard for him to breath.

Every Little Bit of Progress

Corban seemed a little more alert and comfortable the last 2 days. He is still pale however and started having some more swelling last night. Pray that he can get his legs braced soon, so he can be moved more easily (which will help with the edema and the fluid on his lungs). If he can be picked up, the fluid would drain out better. If the fluid drains out completely, the chest tubes can be taken out and he could start eating. Every little bit of progress is something to be excited about. Just pray he keeps progressing and doesn't have any more set backs!

Poor Pale Baby

Corban seemed a little more alert and comfortable the last 2 days. He is still pale however and started having some more swelling last night. Pray that he can get his legs braced soon, so he can be moved more easily (which will help with the edema and the fluid on his lungs). If he can be picked up, the fluid would drain out better. If the fluid drains out completely, the chest tubes can be taken out and he could start eating.

Burdened for Him

Today, A LOT of fluid has come off of his lungs, and really helped decrease the swelling. So that is a huge answer to prayer. He is still in a lot of pain though. Has to be on strong pain killers throughout the day, so every time we see him he is "sleeping." Oh how I would love to see those eyes again!

Also, when I went to see Corban tonight, his nurse just said "Corban is a very sick little boy." Usually she will rattle off a list of things that happened that day and adjustments they've made. We are very burdened for him and praying God spares him. He's got a lot to fight and not a lot of strength.

Middle of the Night Scare

J just told me the phone call we got from the doctor in the middle of the night was more serious than they initially made it sound. Corban's heart rate dropped to 25 this morning at 5:00, and they had to resuscitate him. Please keep praying for Corban. We almost lost him last night.

The Swelling's Gone Down

Corban's swelling has gone down a great deal. Praise the Lord!!