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!