Saturday, August 8, 2009

Jack - "King of the NICU"

If the NICU were our educational system, Jack would have tenure. If the NICU were an Indian tribe, Jack would be the old wise elder. If the NICU were a Fortune 500 company, Jack would have worked himself up to President/CEO by now. As one nurse put it a week ago, Jack is simply "King of the NICU." New parents of preemies who have come in the last months hear the legends of a baby who has pretty much seen it all and lived to fight another day. We think he may be destined for the Missoula NICU Hall of Fame.

Jack tipped the scales this week to go beyond the 4 pound mark, which means he weighs the same amount as the laptop computer I am using to write this update. Four pounds seems absolutely massive to us. Most of the weight he has put on since birth has added to his girth. He was 11 1/2 inches when he was born, and he's now somewhere around 16 inches - not even 50% higher. He weighed 1 pound, 2 ounces when he was born, and now is somewhere around 4 pounds, 2 ounces - a 350% change! Actually, you should check my math on that one. As a lawyer I'm only required to know how to take 33% out of everything, so I could be totally wrong on my calculations.

This poundage mark is also the threshold for an important time in Jack's NICU stay. As you all know, Jack suffered significant brain hemorrhages in his first 48 hours outside the womb, a common and sometime deadly problem in extremely low birth weight preemies. This predictably led to a condition called hydrocephalus, where the brain can't recycle out brain fluid and the brain ventricles swell. A reservoir was placed in his head allowing the doctors to drain fluid out (usually every day or so), thus relieving a lot of pressure on his brain. Now that he's reached the 4 pound mark, he is a candidate for a shunt. This is a devise that will drain the fluid out of his brain and into his abdomen through a tube that goes underneath his skin.
Shunts are not the end of the world, but they are permanent. They need to be revised surgically throughout the patient's life, and they can often become infected. A small number of kids who get reservoirs don't have to have shunts. The plan for now is the doctor will tap the fluid from his brain for the last time on Saturday and then see if his ventricles are able to drain on their own over the next few days. If not, he may get a shunt as early as this week or next. Say a little prayer this week that he won't need the shunt, and that if he does, the surgery goes well.

The shunt won't be the last thing Jack faces in the surgical department. He has a hernia that needs to be taken care of at some point, possibly at the same time as his shunt surgery. Hernias and micro preemie boys are like the Detroit Lions and losing football games - they go hand in hand. Preemies also develop eye problems which require laser surgery before they leave the hospital. Jack's eyes have not quite gotten to the point where he needs surgery, but it's very possible they may need it before he goes home.

We have heard some nurses speculate about his departure date, but everything at this point is just rumor. We are getting anxious to have him all to "our own," but we also don't want him to leave before he's ready. He was premature in his arrival and we'd prefer if he was mature enough to take on his his new kingdom outside the walls of the hospital.

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Tami said...

Four pounds - wow! Way to grow Jack!!! Isn't that an incredible feeling when you get to speculate on a going home date?

I'll say prayers that Jack doesn't need a shunt, but that if he does the surgery goes well.

Cayden has bilateral hernias that he still needs an operation for. You are right, they are very common in the little preemie guys. Cayden also has some ROP issues that were almost to the point of surgery, but he narrowly missed that boat. I hope Jack does too!

Tell Jack to keep up the great work!


Debbie said...

I love your updates. It's wonderful to see your little guy grow! God is awesome.

Kristin said...

I know this is an old post, but wow I really wanted more info and someone recommended our site. Our first preemie (now 18 months)was a 27 weeker, 2 lbs. 13 oz. and did beautifully. Our second preemie was a 25 weeker, 1 lb. 12 oz. She has been quite the opposite of her brother. At 8 days old she had emergency NEC surgery in the middle of the night, which wound up only being a perferated bowel, thankfully!! Then, she started having issues coming off vapotherm. So they decided to operate on her PDA (open valve in the heart). Still had issues. Found out she has mild ROP. Then, they decided to do a head ultrasound again to see if it has something to do with her crazy desats and bradys. We found out yesterday. Her original 2-3 grade brain bleeds are now a grade 4 with hydrocephalus. She is scheduled to have the ventricular access device put in. They already have talked to us about shunts as well. They told us she does have brain damage, but obviously at this stage it's impossible to know if it's minor or major. I just started reading through your blog, but I def. will keep reading. It's good to hear from others who have been and are in a similar situation. Thanks for writing all this. Someone on It's a Preemie Thing recommended your site, just in case you wondered. :)