Reservations.

We have a table for one booked in the the cleanest room in the house tomorrow at 2:25. Please note that the time is hugely speculative. We will likely be in late morning as the wee ones often get to jump in line.

The swelling in his head is called hydrocephalus (Water on the brain).
There are 4 ventricles in the brain. They are interconnected. All four generate spinal fluid. There is a clot between the third and fourth ventricle so the fluid generated in 1-3 has nowhere to go. The clot is most likely only blocking part of the flow we are only trying to release the excess pressure in 1-3.

The plan at this point is to install a "Ventriculoperitoneal (VP) Shunt". The procedure takes about an hour. There is one incision on the back of his head and one near his belly button. A tube will be inserted from the back of his skull into the ventricle. They make it longer than you would expect so that as he grows the shunt will continue to function.

They will fish the other end of the tube between his skin and muscle into his abdominal cavity. There is a regulator near his head to control the rate that the fluid leaves his ventricles. Too slow and we don't reduce the pressure, too quick and we run the risk of causing a bleed. The tube in his belly is also longer than required so that there is room to grow.

The procedure is considered pretty simple. The primary risk is infection (they even use anti-bacterial tubing). Most of the concern comes later on. The only way to tell if the shunt was working is to detect that it failed. It is possible for preemies to develop to a point where they no-longer need the shunt.

Today's Head Ultrasound found some new bleeding in the left-lateral ventricle. Its pretty small, and is still contained within the ventricles(a good thing). We are hoping that it's over and once we solve the pressure issue we can move our focus to growth.

Haven't we been here before?

So Tyler's A's and B's are acting up again. He is going through periods of clustering spells that require a lot of stimulation to wake him out of them. A few of them Saturday night and Sunday morning he needed to be bagged. Bagged is when the nurse has use a bag to push oxygen into his lungs. So we are booking a surgery time either for Tuesday or Wednesday when the OR has an opening. This isn't an emergency, but the A's and B's are telling us the pressure in his head is affecting him. He is eating well and weighed in at 4lbs and 4ozs on Sunday. Tyler is still alert and response well to all his neurological tests; he cries at appropriate times, pupils are responsive, eating well. We are going back up today to figure out more of the game plan. We will keep everyone updated as we know.

Five Weeks Old

Tyler is doing well. He is eating wonderfully and growing at a great rate. He has visits at the bar and is surpassing expectations with his interest and ability to suckle. They have started to wean him down on the high-flow and is tolerating it well. The last couple of days we've seen less A's and B's. Today, he has another ultrasound to see how his ventricles are doing. The neonatal team is rather sure he will go to surgery next week for a shunt. (This surgery thing is starting to sound like a broken record). Over all we are waiting for him to grow and his head issues to be resolved.

Rachel is doing great. Today's game is playing birthday party. She sings "Happy Birthday" to everyone while serving a block puzzle cake. Some of the blocks are stack up as a candle and we have to blow out the candle before we can eat the cake. She is a very good server.

When she wasn't serving birthday block cake, she was helping Daddy hammer some nails. We are still trying to make the necessary repairs to our house. One of the projects Ben was working on was getting the ground squirrels evicted from the garage by installing the trim again. (In May he started to fix the rot behind all the trim and clapboards).

It is very nice to be home for a while. The ICN is very noisy and busy. To spend repeated whole days in there is very exhausting mentally and physically. I'm not sure how babies are able to sleep and grow in this environment. If the nurses or us aren't changing Tyler's diaper, giving him an exam, or feeding him, there are alarms sounding, people coming and going, and other babies crying. Ben and I are toast at the end of the day. Then add the mental strain that our baby is here. Constantly on the verge of surgery for such a tiny little baby, seeing him hooked up to wires and tubes, and the unknown. It's a small wonder both of us are sane still after five weeks. It's a full time job not to let depression set in.

Going Home (Just the parents this time)

Tyler is doing well, he is growing about 45 grams a day (about 1.5 oz.) Most of his growth curves are right on the line. His head circumference is up .5 cm (slightly more than 1/8") but that has been stable for 5 days so it is well within normal growth. His head even looks less swollen today. We were greeted today by a wide-eyed little boy.

The Quick-Brain MRI came back yesterday and the Neurosurgeon says we're still at a place we like to call "about the same". If we were to wake up in "Significantly Smaller" or "Perfect" we would be even ecstatic. As long as we stay out of the larger end of town we are going to continue to monitor at least until he has reached the age and size where they are more comfortable doing surgery on him. Everyone has the hope that he won't need a Shunt, but the odds of that vary greatly depending who you ask.

We are going to head to Amherst today for a few days. Life in a NICU takes a lot out of you. Even with all of our successes this trip it is time to get some real sleep again.

Warning Warning, Danger Will Robinson!!!

Let this be a warning to all!
Do not, under any circumstances expose Tyler's bum. EVER!

I got nailed. He got me good! Tyler waited for the gap between the last wipe and placement of the diaper and took his shot. Between the fits of laughter the nurses were able calm down long enough to finally offer me some scrubs to wear for the day. If you can't laugh at that you are dead.

In addition to the "First projectile pooped on dad" milestone we also crossed the 1 month barrier. Today is day 31 of life it is also the first day of gestational week 33! Today's weight is 1735 or 3lbs. 14 oz. just about 1 pound above birth weight. Tyler had an eye-exam yesterday that result came back immature (as expected). They will re-check in a week or two.

They just rolled Tyler out for his follow-up head MRI. They wrap him up in a little strait-jacket (Looks like a little blue burrito) and replace all of his monitors and respiratory with non-ferrous(not magnetic) versions. They tell me he should be back in 10 minutes. Hopefully we'll have the results today.

Much ado about flooring.

Late last night Tyler became a carpet dweller. That may not sound like alot to most people, but it means a great deal to us NICU-ites. We got a "Woo Hoo" from the folks at the front desk in addition to our normal AM greetings today. They like to keep the kids requiring lots of attention and hardware on the tile. Last night before we left we even got a sneak peek of his new bedspace from the Charge Nurse/NICU Real Estate Agent. It's a cozy one bedroom with a view of well... more windows. But it's real sunlight for a change. We may even be able to tell day from night now :-).


Tyler is doing rather well today. He has reached a point with his nursing that if he's having a good session they will reduce his next feeding to compensate. Here's a shot of him relaxing on my lap.

Where is Mke Rowe when you need him?

We have a new Dirty Jobs episode. We finished feeding Tyler and was putting him down so we could get our dinner when I smelled the familiar smell of dirty diaper. We proceeded to change his diaper. We had him wiped off and Ben was lifting his legs up for me to put a clean diaper under him when Mt St Helens blew. Poop shot out everywhere. He was covered, the bedding was covered, the end of the bassinet was covered. He almost covered my face with his explosive matter. Ben and I broke down laughing. Just about the whole unit came over to see what had happened. Tyler seemed to feel much better afterwards. We got to take home his soiled belongings in this cute baggie.



Other than explosive butt, Tyler is doing great. He is tolerating his feeds very well and will take some time to nurse for a minute or two. He is on very little respiratory support and his A's and B's seem to be mild. The majors thing we are monitoring are his head and waiting for him to grow. Looks like we are waiting til the first week in July to install a shunt. Until then we are watching for changes and will tap his head again if we need to. He goes in for another quick MRI on Tuesday to give us another view of his ventricles and clots. There is always a possibility that we won't need a shunt but it is so remote that it's easier to accept the upcoming surgery. Once he has recovered from surgery and the surgeon releases him, he can then be accessed to go to SNHMC. It does look like he will be in a ICN at least though parts of August, barring any detours.

We had a great opportunity to take a video today. Tyler will spend periods of time just looking around and watching us. He does have a blanket over him to shield his eyes from the light.




I believe tomorrow we will be moving his bed. We were shown a new bay that is in the back room on the carpet and is semi private. It will be much quieter and easier to breast feed.