Exhausted But Home

Internet was flaky up there this time around. Tyler is just fine. I went to our Pediatrician on Wednesday for a weight check and she didn't like the look of his bump and his fontinel was full. He still has a pretty nasty head cold to boot. She asked if I had called the neurosurgeon yet. I said no, I was waiting to see you before I did since his full fontinel is new today. She asked to call and did. She was concerned enough that it was decided we should have him seen by Neurosurgery. So we rushed back for one Dr office, packed the suitcase we put away 4 hours early, and was one the road for Dartmouth.

With Tyler in the car the trip somehow grows to take 2 1/2 or more instead of 2 hours. We usually have to stop to feed him or something. We finally got to the Emergency Department (ED) around 5:30. They were full with more traumas coming by ambulance and helicopter. It took a better part of an hour to get a bed. Usually they try to get the infants in ASAP. Once we got in things went rather quick for an ED. Tyler blew through an outfit and I didn't have any spares on me, the MRI was ordered and done within a 1/2 hour, he didn't finish his bottle before the MRI began and was wake through it, and the PEDI Dr and Neurosurgery Resident came to see us all in about an hour and half. Tyler was funny in the MRI. I had to hold him still and give him a finger to suck on. I could see his eye through the mirror set up and his eyes shot to what ever side the big bangs started and track them to the other side. He can hear.

The MRI showed that his ventricles are about the same post operative size-good. The cyst is still smaller than pre-operative size but slightly larger than post-operative-hmmmm. On exam, he was alert and his eyes responded correctly and he eats very well-great. The suture line doesn't leak-super. The neurosurgeon resident gave us the option to admit him for observation or take him home and watch him ourselves but give a call to the office in the morning to talk to Tyler's surgeon. We kept the baby of course and stayed at David's House the rest of the night.

I talked to his Surgeon Thursday morning. She came in on her day off to read the films from the MRI. Long story short, we can't do anything until the cold is gone. Which gives us time to see if the cyst is really growing again or if the cold causing the fluid to back up. A cold will increase chest pressure because it's harder to breath. With increased chest pressure other body systems will also become more pressurized. So we are waiting four 3 to 4 weeks and repeating the MRI. From that picture we can decide if we can leave him alone, poke more holes in the cyst, or if we have to shunt the cyst, or shunt both the cyst and ventricles. It is very reassuring that his surgeon doesn't just want to go in and shunt him. He isn't a simple case, he is actually a "complex hydrocephalus" case. This is medical terminology not just a description of Tyler. He has more than one cause and no clear answer to fix it. We could shunt too early or the wrong area and cause even more problems. The surgeon is hoping that this is all due to the cold or if she has to go back it, just to poke another hole in the cyst. In the mean time, I get to enjoy juggling a newborn and 2 year old in the comfort of my home.

Just another ride in the MRI He's ok

Tyler at the wheel.

Sharron just called form the Pediatrician. She does not like the look of the bump of fluid under the sutures on his head. We have an appointment with an MRI machine in Lebanon. Won't this be fun... More to come.

Sniffles And Penguin Update

The first stuffy nose cold is runny though our house now. And yes, Tyler has it too. With all the trips to Dr.'s offices we've made, it's not surprising that we've picked up a cold virus despite washing and Purell. We've watched Rachel first come down with a cough and a slight fever on Tuesday. When a movie is more appealing than her playground, you know she is not feeling well. By Thursday morning we could hear a dreadful rattle in Tyler's breathing. Friday we went to the Dr.'s office just to make sure his lungs were clear and they were. After a few sleepless nights holding a baby that no one wants you to medicate because the stuffiness makes him unable to lay down on his back, and he's doing fine. Tyler is a superstar. His oxygen saturation never left the high 90's even though you can tell he was having a hard time breathing and he hasn't lost much weight from his 2 days of loss of appetite. At Friday's visit to the Dr, he weighted in at 8 pounds 1 ounce. Up 15 ounces in 8 days. The Dr. did a double take on those numbers. So far Saturday night, everyone is resting comfortably. Rachel still has her cough, but her playground is her best friend again. She wanted to sleep on it tonight. And Tyler is back to eating like a little piggy every 3 or so hours.

We had our little trip to Dartmouth on Wednesday. The ride up, a few Dr visits, and the ride back is exhausting. Tyler had is last torture eye exam. He graduates to having a high risk eye Dr in Concord now. He will be watched for problems like lazy eye and poor vision issues and is no longer at risk for retina problems. I believe he will have a regular eye exam around November. We also saw the Neonatologist. She thought Tyler look great. Very happy with his weight gain, his tone and movements, and off the oxygen. We did not see the neurosurgeon this trip. We've got to go back next week for that. He still has this big egg shaped pocket of fluid under his sutures that everyone up there says is normal. also our visit from Early Intervention was boring. It was all paperwork. The person who came out wasn't a therapist. Within the next two weeks he will be seen by a therapist and speech development.
All in all, a sleepless week for parents. Hopefully Tyler is growing fast enough to be on track to slow down on night feeds here soon.

7 Pounds and Growing

Tyler has reached 7 pounds now. He eats like a little piggy, between 80 and 100ml a sitting. That is between 3 and 3 1/2 ounces. That is quite a bit for a someone his age and size. We know how much he takes because we give him everything by bottle still. Not how I pictured feeding him, but he gets the best nutritional source I can provide him. He's so used to the bottle now, I don't know if I'll ever get him to nurse naturally again.

His head is healing up great. There is still fluid behind the sutures which makes it look like he has an egg under his skin. It's all spinal fluid that is backing up into the canal the endoscope created to get to the cyst. In time that will heal and stop channeling fluid to the skin and the fluid left under the sutures will absorb. His fontinel is empty and soft. To us that is a good sign that his pathways are unblocked and funneling fluid correctly.


He acts like a normal newborn to us now. He wakes up every 2 to 3 hours and demands to be fed. He will spend quite a bit of time awake looking at things. Loves to look in mirrors. He is starting to give us true smiles now. They don't come everyday, but there have been a few "I'm excited to see you" smiles. The other cool thing he is doing is discovering his hands. If his binky is just out of reach from his mouth, you can see his arms and hands moving trying to figure out how to get it. Also when he's looking at me or his mirror, his arms are reaching towards us. He's entering the time were little subtle discoveries make my day.


Wednesday we head back to Lebanon for a few hours for an eye exam. Hopefully this is the last one he'll need. Then Thursday we meet with Early Intervention for the first visit. We are both rather interested in what they think of Tyler. His developmental milestones will tell us how badly damaged his brain was. So EI and his developmental exams will be closely monitored.

Happy Dirthday!

Today is Tyler's due date. He has been out and about for just under 3 months now. After his surgery last week he is doing much better. He was eating 300 CCs on a good day. Today we will be lucky if takes less than 600 CCs. His awake and alert times are longer and more plentiful. We are seeing no signs of respiratory issues anymore. The only down side at this point is that he does not sleep as well at night as he used to. We suspect that it may be too quiet for him in our room. A NICU may not be the best place to learn to sleep...

Up to this point Tyler's age was stated in terms of gestational age. He was born at 28 and 3/7 weeks Today would have been 40 weeks and 0/7 but it is also day 0 of life. Preemies get to have 2 ages. His actual age which is 3 months and his corrected age which today became 0 days. We're told that some of his developmental milestones will occur at the expected real age and some on the corrected age. Thought they cannot tell us which events to expect when. At 2 years old (I'm not sure which scale) development is said to begin to match that of any other 2 year old so we can drop the second age.

Lately Rachel has been on a Birthday kick. She has a "Birthday Set" consisting of a wooden cake, velcro on candles try and serving spatula. I think it is safe to say we have had at least 50 birthday partys this past week. She will assemble her cake set it in front of the guest of honor. Bring over everyone she can find (stuffed and otherwise), and sing "Happy Dirthday" while dancing around the cake in Ring Around the Rosey style until it's time to blow out the candles and serve the cake. The she will re-assemble the cake and start all over again.

Tonight we had our weekly gathering at my parent's house. We had been thinking about doing something special on Tyler's due date. Tonight turned out to be a special treat for Rachel, a real live Dirthday party with presents, cake and even candles.

Home Again

Tyler is doing just great. We came home today. He came off the vent yesterday around 5pm and ate his first meal around 830pm. Once he showed he was able to breath on his own and eat they started taking out his IVs . It takes little one some time to recover from the anesthesia The neurosurgeon came in and looked at him last night and this morning and was very pleased on his recovery.

His head came out of surgery very deformed. Some of the fluid escaped because of the incision. The bone plates that form his skull shifted, some overlapped and others spread. On his left side he had a mountain bump while the right was flat. Over the last 24 hours his had has reformed and looks pretty normal again. We now have to be over vigilant in making sure he sleeps on a different side every couple of hours.

Tyler has an incision on the right side of his head that is about 2 inches long. And he has spots all over his head where the "lifesavers" where. The goal now is to let the extra fluid in his head drain slowly and equalize. Too fast and it will cause more damage, too slow it won't relieve the pressure. Today's exit MRI showed the cyst smaller and no post-op bleeding. Yeah!!!

He also graduated to a big baby's car seat!

4th time is the charm.

Tyler is back in the ICN. At the moment he's in the middle of a rats nest of wires and cables. They like lots of access in the Operating room. I'm sure it's all neat and orderly when they are operating, but when they go to transport him back it all gets shoveled into the crib. After an hour or so the ICN team has him all sorted out. If things go well they will start removing tubes over the next few days.

He is starting to wake up on his own and is thinking about fighting all the wires and tubes. His eyes are open and he's looking around. He looks like he may have some pain especially when he moves, but they just gave him some morphine to help him out. As long as Mom or Dad has a hand on him he stays calm. Over all he looks like "What the hell happened!"

Doctors all say he did great! He's on a Ventilator at the moment until the Anastasia wears off. They are going to hit him with some pain killers so he stays still while the fluid in his head settles back into place. One of the big post-op dangers is the fluid shifting too quickly and causing a bleed. Chances are he also has a pretty killer headache. The Surgeon reports that some of the old clots even came out while they were flushing the ventricles (a bonus).

The surgeon came up to speak with us after surgery. Everything went well. She did the procedure by hand with the help of the computer guidance for directions. So now we just wait to see if the cyst can drain out slowly enough not to cause problems yet quickly enough before the hole heals over. We expect him to be close to line free in the next 24 hours and him to recover quickly overall.

(Can you tell who wrote which paragraph?)

Surgery Update #2

Just got a report that they are closing now, everything is fine!

More to come when he's back in the ICN.

Surgery Update #1

We just got word that they started in the OR at 2:30 ET and everything is going fine.

And away we go.

Even NPO for a few hours Tyler was just relaxing waiting for the ride down to OR land.
They just wheeled him down. So now we sit and wait.

More as we get it.

UPDATE 12:35 ET: The OR is booked for 110 minutes. So we should know something within 2 hours.

MRI fairies...

We got a call this morning at David's house from the Neurosurgeon that the MRI was done and that we are not to remove the dots. The MRI had been planned for just before the surgery this afternoon but they came late last night and did it while he was mellow. They didn't even need to sedate him.

He is having one last "trip to the bar" before surgery before going NPO (can't eat anything before surgery). The last we heard his slot in the OR opened at 1310 today, since then we have heard the window is between 1145 to 1310 (betting windows are open). His surgeon is in the OR this morning with another case so depending on how that goes his slot will be adjusted.

I need to run across the street and pick up a USB card-reader to get the pics posted. So print out the last pic of Tyler's head that we posted, take out a roll of green life-savers. lick one side of each one and stick them all all over his head and you have the image.



More updates to follow.

Just Waiting

Other than being rather mad at being in the hospital, Tyler is doing great. We haven't seen anymore sun downing or other symptoms since Saturday night. He is eating well and his fontinel is soft again. The description of events in the last 10 or so days with his fontinel becoming firm and then soft after a day then doing it again in 4 or 5 days later is perplexing. But then again, this is Tyler and nothing about his health has been by the book. (Good thing too!)

Today's full sedated MRI has been postpone on account of the machine that does the GPS stuff is broken. Tyler is getting a very detail MRI with fixed points mounted on his head so that the neurosurgeon can use a robot to help safely navigate to the cyst. The rumors I've heard today is that he will get this MRI right before surgery tomorrow. Surgery I believe is around the 1pm hour again. I'm very interested to see if Tyler will go for this or opt out again.

Ben is slowly looking human again. Hopefully tomorrow he will be back to normal.

If life is a highway... I'm road-kill.

As if Tyler needed to remind us that he is still driving the bus, we are re-established as a NICU family. According to Sharron it's like old home days up there, everyone stopping by to say hi. I have found myself rather sick, and banned from the ICN (and any proximity to Sharron). It is most likely the virus that we all thought was food-poisoning when it hit those few unfortunate souls at the beach last week. I will spare you the gory details and say only that in 8 hours I have gone from queasy to empty. Most of the mental images you have now are likely accurate.

From what I can tell the plan is to watch Tyler closely looking for any neurological signs of distress, and bump up the Full MRI and Surgery to early this week. As a direct result of Tyler's uncanny ability to avoid a shunt (3 tries so far), the Neuro team wants to fenestrate the cyst. The two possible routes that were explained to us were fenestration and shunting. Shunting is "easier" to do, but more likely to clog or need follow-up work. Fenestrating is just a $4 word for perferating. The Cyst is nothing more than a collection of CSF (Cerebral Spinal Fluid) that got trapped in the wrong place. Fenestrating it will allow the fluid to drain and prevent it from collecting again. The catch is that it's harder to get the equipemnt into position to do the job.
The Cyst is in a really lousy spot. Smack between the Cerebellum and the Brain Stem.

The hope is that the full MRI will give them the data they need to program a robot to do the actual work. They call it Image- Guided Neurosurgery. As a parent with some robotics background I say cool! except for one catch. In adults they literally screw a frame to your head (with real screws) so when you have the MRI you then have reference points that the robot can use to know EXACTLY where it is. The issue is that Tyler's head is too flexible for that kind of frame to stay in place. It turns out that they use the same setup used by video-game designers to
capture motion of a subject. They place MIR visible stickers on a few spots on his head and run the MRI, as long as the stickers stay put the machine will know exactly where it is and according to some reports be able to deal with some flex in his skull.

An MRI with call-ahead seating.

So we (Sharron, Ben and Tyler) were sitting on the couch enjoying some nice awake-alert time with Tyler. When Sharron noticed one of the signs we have been trained to watch for. Sun-downing is when your eyes are physiologically forced to look down. There is more white visible at the to than at the bottom of the iris. Tyler's cyst is in a place that is expected create issues with eye movement first. I called the Neurosurgery resident and as this is a new symptom we decided it was best for the team to have a look at him.

Uncle Tim offered to drive as Sharron and I are toast. It turns out that a PulseOx monitor does bad things to sleeping habits. By the time we got all loaded up Tyler's eyes were back to normal, and his fontanel was soft again. We have seen him have symptomatic apnea, and that is one home game we have no interest in playing. 2 Hours later we are back at the Emerald City, this time trying out the Emergency Department. We checked in at the desk and to our surprise heard that MRI was waiting for us and we better hurry. After another quick-brain MRI (This time mom got to ride along). We met with the resident and decided that Tyler better stay over. His cyst is not dramatically bigger, but the arrival of new symptoms is worrying. Hopefully the ICN has space.

More as we get it .

Look Mom, No Canula

The last couple of days, Tyler has made a great effort to tell us he doesn't want anything sticking up his nose anymore. Every time we taped the canula to his face, he would find creative ways to pull it off. We've seen it in his mouth, eyes, closer to his ear than nose, and finally wrapped around his neck. Since he is keeping is oxygen saturation in the high 90's we will leave it off him. He is still on the monitor and we've got the tank right next to him just in case he plays games.

He really is starting to settle into a newborn routine with his eating, sleeping, and pooping. I'm still very busy in the morning getting everyone ready for the day, but I'm starting to have a hour or two in the afternoon to sit and take a nap as well. Tyler's head is full again, but we are not seeing any clinical problems. He eats very well and has great alert times. He can prop his head up for a few seconds and move it with ease from side to side when he is propped up on my shoulder.

We still don't have exact dates for the MRI or surgery yet. I hope to know Monday so we have a minute to pack.