"Good lord! Look at the size of those ventricles."

At 10 minutes to 9 am I was feeding Tyler breakfast and eating myself. When I reach over to get his cereal box and hear Thump!, Waaaaaa! Tyler had kicked the kitchen table so hard that his high-char fell over. He took a pretty hard bump on the head. He cried right away (a good sign). He had his 6-month eye follow-up yesterday so we had a hard time telling if his slow pupil reaction was a result of being dilated for the exam or the whack on his head. So off to the ED we go.

After the fall tyler is overall acting just fine. Walking, talking, hungry not vomiting. The only real concern we had was the bug hit to his head and the slow response of his pupils to light.

On the way to the ED Sharron and I were going over the standard medical history speech. We had to laugh when we realized that we both put pauses in about the same places so that the audience has moments to absorb, react or ask us to define acronyms. You know that you have a complex case when it takes 15 minutes to refresh yourself on the whole spiel.

Things in the ED go as we would expect. The ED was slow, so they jumped us right over triage into a bed. After 20 minutes of the Tyler medical history show the Dr came in and decided to order a head CT. While waiting for the results of the CT we hear that same doctor make some exclamation about large ventricles. When he came in to go over the results he stated carefully explaining that his ventricles were larger than normal, and that it may be "normal" for him with his history. It should be noted that this was the first head imaging that SNHMC has done on him so they had no point of reference. So we did what we always do, asked to see the films. Apparently "normal" parent's aren't interested in seeing diagnostic images of their child's head injuries. When we see them we both blurted out that we thought his ventricles looked smaller than our last appointment with neurosurgery. This was enough to make the ED doc decide to call our friends in Neurosurgery. After some back and forth they decide to send us home.

About an hour after we get home Sharron gets a call. The ED doc decided to discharge us without clearing it with radiology. We were to report up to Lebanon and see Neurosurgery. Radiology didn't like something that they saw in the CT scan. So here we are. The ED here is so full we get the first quick exam in the waiting room. The Neurosurgery crew compared the images we brought up with us. It appears that there was something that needs a closer look.

The bright white bullet shaped object is part of the tube of his shunt the white circle is bone, the light grey is brain and the dark grey is ventricle fluid. The area of concern is the small light shadow next to his skull just to the left of the shunt tube. It could be new today, or just new since his last MRI. Based on the color the docs suspect that it is most likely blood.

They are going to keep him here overnight for observation and a quick MRI in the morning to make sure everything is good to go.

June 12th

Tyler as well as the rest of us will be walking again for the March of Dimes 3 mile walk up at Dartmouth-Hitchcock Medical Center in Lebanon on June 12, 2010. Please check out the March of Dimes site you see on the right. If you can, we love to have donations or sponsors.

I've been working on the Parent Council at the Lebanon ICN for the last year or so now. I've enjoyed volunteering quite a bit. I've had the pleasure of working on a few project aimed to help parents transition into ICN life a little easier. I've also shared my thoughts on different topics that may make life a little more comfortable for parent and healthier for baby. Working closely with the Parent Council, I've had the pleasure to see first hand where some of the money raised by walks is used for. A few things the Parent Council has purchased with money granted by the March of Dimes are new mirrors and chairs for parents to comfortably hold their babies in kangaroo care (when baby and parent are able to be skin to skin), information booklets to help new parents adjust to ICN life, and binders similar to the one we made for Tyler to give out to long term care children to help families organized and keep important information at hand. These are just some of the items and programs I've seen to help the children and parents of the ICN. Without generous donations these projects and much of the research the March of Dimes fund can not happen.

There is still a lot we do not know about premature birth and what causes it. By sponsoring us in our walk, you can help give back to a cause the most certainly helped Tyler win his fight to survive.

http://www.marchforbabies.org/SharronBenRachelTyler

No longer Purple.

In true Tyler form, he came home from the ED with the most energy I've seen all day and wanted eat and drink. I think all he did was nibble and sip on something until he went in for a nap at 330. He's still sleeping but not without me checking every once in a while that he's breathing and the right color. It's been quite a day and I'm hoping I can sleep tonight.

Short side-trip on Tyler's Bus.

We are back home. At the moment the plan is to watch and wait. We don't have a single combined answer to what is going on. We ended up spending more time waiting for doctors to call each other than anything else.

Pedi has seen viral cases cause the blue fingers and toes 1-2 month olds. Other than that call Neonatology.

Neonatology is leaning towards something viral. They don't know how that explains the blue fingers in an 18 month old. They suggested calling Neurosurgery.

Neurosurgery says to call back if there is still something not right after viral causes have been ruled out or neurological symptoms develop. Otherwise they don't see a reason to go poking around in his head.

ED Doc said that she found all of the above rather unsatisfying and had hoped to be able to give us a more solid answer.

So we are left with providing care and comfort as if it is a virus (most likely) and watching for other symptoms.

Hopefully, that is all.

Just when things were getting the good kind of boring.

This morning Tyler work up with a EPA super-fund site in his pants, blue fingers and toes, and a nasty case of the grumps.. I'm writing this from an ED bed in Nashua. We'll post when we know something.

And for kicks here's a pic of a recent "art" project.

November is Premature Awareness Month!

I'm collecting clothes for preemies! November is Prematurity Awareness Month. The Upper Valley is doing a clothing drive for the ICN at Dartmouth to help give clothes to babies born way too early. To see Tyler wear his first outfit 3 weeks after he was born was a real emotional triumph. (See earlier post titled "Tyler's new clothes" http://twentyfourweeks.blogspot.com/2008/06/tylers-new-clothes.html ) Seeing real clothes on him gave me a sense of normalcy and most of all hope. Dressing a baby provides so much enrichment and bonding. It helps the baby to familiarize themselves with mom and dad. It helps the parents to feel like they are a big part of their baby's life. Please help me pass hope to another family currently in the ICN with a donation of preemie clothes, blankets, or hats.

At the bottom of the this web page are links for patterns for those crafty people in the group who would like to help out as well as on-line stores.

http://www.marchofdimes.com/vermont/8026_30288.asp



We see a lot of Dr's tomorrow to start RSV shots for the winter. We've been extremely busy chasing after a walking boy who (you guessed it) LOVES to climb everything. We've caught him climbing up 2 toys he's position to get onto grandma's china cabinet. I don't have a lot of spare time to post right now. HA!

And he's off!

Yesterday was a very exciting day around here. Our regular Early Intervention therapist came back from some time off and apparently tyler was in the mood to show off. Sharron had to wake him up from his nap which is usually a recipe for a pretty grumpy session. Not the case yesterday. We got 3 or 4 sets of 2-4 unsupported steps out of him. This is really new, so new that neither Sharron or I had seen more than one or two unsupported steps from him so far.

This is the 3rd or 4th try at getting him on tape, and not a very good angle, but who cares? he's walking! Apparently the only items Tyler deems important enough to actually walk for are the remote control and a cell-phone.

Rachel is just loving school. If she had her way she'd go 7 days a week. Every time I ask her what she did at school that day the answer is always the same, huge smile and "PLAY". Everything else fits in to the no news is good news category.