The last thing we need is a longer 2008 !?!?

The boys in France has decided that the earth is running slow in its annual slog around the sun. So now 2008 needs to be made one second longer by adding a leap second. [The official notice] How on earth they did not notice that we have had enough of 2008 is beyond me. Wouldn't it be just as easy to add a second to the beginning of 2009?

I don't think they make words to describe the kind of year that this has been (At least none that I would want my mother or grandmother to read). We have all been through the ringer in so many ways it is hard to know where to start. I have looked over this blog from time to time this past year. Every time I end up with the strangest feeling. The events behind the posts comes rushing back, as does the sinking feeling. It's a great way to remember where we have been and an important reminder of what we still have in front of us.

Tyler is doing great! He's is really starting to like the rice cereal. Sharron took his monthly "Penguin Picture" today and sure enough he's still growing like a weed!


Rachel giving Tyler a kiss.


Despite not liking 2008, I am reminded everyday that the events as awful as they were at the time developed into the kindest sweetest little boy. I may never want to do that again, but I also wouldn't trade Tyler in for anything.

Festive Holiday Photo Update

It has been a while since our last post. Overall things are going well. Tyler is doing GREAT! and growing like a weed. His eyes are tracking better every day and he's even tried rice cereal.

Between the ice storm and the holidays we've been running flat-out for a few weeks now. We were without power for 6 days and out of our house for 7, it took an extra night to re-start our house. As of Dec 23 PSNH still reports 2,000 homes without power.

I thought it was about time to do another gratuitous photo update so here goes.

This clip was taken the the morning after the ice storm. The sky is clear and what you see falling is the 1/4" of ice coming off the tree branches. Almost all the ice was off the trees by the afternoon, but the damage was already done.



On Christmas Eve Day Rachel and Dad went out to build a snow man and ended up building a "Snow Castle". It was quite a hit!



Christmas Eve we made cookies.



Christmas day was amazing Rachel knew what was going on this year and really got into it.



Tyler didn't have a clue what was going on, but really likes his Giraffe.







This was the year of the Penguin, Aunt Lys made Tyler his own stocking.



Rachel and I went out sledding after the Christmas festivities had wound down.
And the ever popular "Walking off into the sunset" pic.



Happy Holidays to all!

Lots of Ice.

We're now working on our fourth day with no power at home. The ice storm took out most of the region on Friday. New Hampshire had almost half a million customers without power at the peak of the outage.

We have been camping out at the compound. My grandmother has a generator so we have been able to keep Tyler warm and comfortable. We hope to have power back today, but the same could be said all weekend. PSNH (The local Utility) reports 138,000 homes still without power, with slow and steady progress. Once we get power back I expect it will take 6 to 12 hours to get the heat started again and then we have to clean up all the clothes and dishes used on our adventure.

It's been a LONG day.

It's 9:40 am and 11 degrees(F) outside, I've been up for at least 5 hours...

I don't know if she got upset about something, ate something that didn't agree with her or is just plain sick. but at about 4:30 Rachel got sick and necessitated changing just about everything. We have been sitting in the Family room watching various Disney and PBS programming ever since. She seems to be feeling at least a little better now that the sun is up. I hope that sticks.

Rachel just said "Santa Clause coming soon". She is really getting good at stringing words together. Thanksgiving is over so the Christmas-ification of our house is well under way.


(Rachel making some very careful adjustments to the tree as it goes up).
(Tyler making sure that the trains run on time, note the head control!)

Early Intervention was here last week and was just thrilled with his progress. Not much else to report at the moment, In Tyler's world boring is a good thing at the moment. Back to work for me.

Six Months and One Week Old

6 Months Later, what a difference!




I had plans to create this post last weekend, but he wasn't feeling well then. So one week late is better than never. November 23rd, Tyler became 6 months old. A half a year has gone by since his rather flashy birth. He is ten pounds over his birth weight and ten inches longer. It's amazing how fast he is growing. Just for comparison sake, I've included the first penguin picture taken mid June, about 3 1/2 weeks old.

Tyler is much better this weekend. Thanksgiving Day is the last time we felt he needed a nebulizer treatment. He is breathing much easier, still a little congestion. Colds can take a week or two to fully clear up. The trick will be not catching a new one.

Today we also went to the New England Aquarium with both Rachel and Tyler. Rachel loved it. She went up to all the tanks and picked out the fish, turtles, crabs, and sharks. Tyler also really seemed to like it. The penugin exibit held his attention and the dark tanks with bright fish also captivated him. He was awake the whole time we were there. Soaking it all in.

Happy Turkey-Day

It is not possible to survive a year like we have had without help, and lots of it. Last year at this time my list of things to be thankful for was short and sweet. A good job and a great family (nuclear and extended) were all that I needed. This year the list is much longer, and includes folks I didn't know existed this time last year.

One programming note before I dive into the list: When we were in the ICN I did promise some folks in there that they won't see their names or faces posted here without their permission. The last thing we needed was a doctor or nurse second guessing what they said to us for fear that it would be taken out of context and posted on the Internet. So please forgive me for not naming names.

So without further ado: (In approximate order of appearance)

Family and Friends We wouldn't be in the wonderful place we are today without the help and support of our whole family. Rachel spent a lot of time with her grandparents this year. It was hard for us to be away from her for so long. It was made easier knowing that she was having the time of her life safe and sound with people who love her as much as we do. There were plenty of times where the only thing we could do for Tyler was to be there for him. Thanks to the support of our friends and family we were able to do just that, together.

SNHMC Birthplace Staff Kept me calm during the very stressful start of this adventure and keeping their cool on delivery day.

DHMC Birthing Pavilion Staff To make me feel as comfortable as I could being so far way from my family stuck in a bed. And to a roommate who was a comfort and company in a stressful time.

Blog-therapy This blog has been a great way to cope through this entire ordeal. It enabled us to share updates and information in near real time without making 20+ phone calls per day, and reach more people. I think I would have put my head through a wall if I had keep track of who has been told what. We have also found it to be a good reality check, we can go back and look at earlier posts and remember what it was like. Special Thanks to Gib,Abby,Ellie and Gus for sharing their adventure and showing us that it is possible to make it out of an experience like this with your sanity (ok, sanity was debatable to begin with).

Wonder-nurse The moment Tyler was born the population of the room jumped to 4 (Mom,Dad,Tyler, Wonder-nurse). Wonder-nurse saved Tyler from literally being born into a bed-pan and convinced the front desk that we really did have a baby in hand and could use some assistance. (I believe the phrase she used was "STAT!").

SNHMC NICU Staff It is rare that we want a doctor to say "You need more help than I can provide". The attending Dr. and his NICU team did a great job getting Tyler stable and shipped off to the Dartmouth in a few hours.

DHART Flight Crew I can imagine that landing a $5 Million aircraft on a parking garage is not without stress. Based on the 48 hours after Tyler's transport to DHMC I think it is safe to say we would be looking at a totally different ball-game without that prompt helicopter ride.

DHMC ICN Transport Team It takes a special breed to hop into a helicopter on a moment's notice and go pick up a really sick kid for transport. Especially when they are scared to death of flying in the helicopter. It takes really special people to be able to walk into a hospital room and put two rather freaked out parent's at ease that these are the best possible people to take your child on this ride.

DHMC ICN Staff We could easily write a book for this section alone. A ward full of people who save babies for a living, what more could you ask for? I can't think of a way that we could have been more involved in Tyler's care from day one. We we not only allowed to hang around for rounds but were active participants. Our feelings, questions and input directed the course of his care. In all the time we were there I never felt un-welcome or in the way. Everyone there contributed to Tyler's success. Nurses, Nurse Practitioners, Doctors, Respiratory Care, Front-desk/support staff.

The Staff and Volunteer's at David's House You can't sleep in an ICN or NICU, It's just not possible. David's House gave us a room whenever we needed it within walking distance of the hospital. A bedroom to call our own, A huge well stocked kitchen, living rooms and a wonderful staff. Anything you could ask for in a home away from home.

Pediatric Neurosurgeons We have had the privilege of working with a top-flight Pediatric Neurosurgery team. I can't imagine going through something like this without such a skilled team!

BlueCross Last count we are up over $600K worth of medical bills. It's a scary thing to get a letter from BlueCross saying that they didn't get enough information so they are denying the claim and you will be in the hook for $300K, but it's all better when you call your dedicated rep and find out it's a standard paper-chase and in everything is fine.

Ben's Job and Co-Workers For all their support and understanding. Giving Ben the flexibility to work when he could and be with his family when we needed him and he needed us. I'm also thankful for to my employer who has been understanding and graciously saved my job until I was able to go back to work.

Rachel one of the strongest two year old I know. She barely skipped a beat with all the shuffling around and not seeing her parents for long periods of time. And then to accept Tyler as beautifully as she has with little resentment towards him. Look out world, she is one confident girl.

And
Tyler for without his strong desire to overcome all his obstacles, we wouldn't have the most sweet smiley handsome baby boy ever! He is so special and as close to a miracle we've ever seen.

Happy Thanksgiving Everyone!!!

Feeling Much Better

Tyler looks and sounds much better today. We given him a few nebulizer treatments when he started to sound wheezy. They cleared him right up. He's perky and smiley this afternoon. Right now he is playing on his floor gym talking up a happy story. The doctor saw him earlier today saying his lungs still sounded clear and he didn't see any ear or throat infections. The doctor also said that RSV isn't the only virus that can cripple his ability to breathe. RSV only accounts for about 80% of the viruses that can cause wheezing, secondary infections, and death in preemies. Most likely what happened is the virus is constricting his airways causing him to wheeze and have a difficult time breathing. A lot like an asthma attack. As long as the nebulizer keeps working and he doesn't need it more than once every 3 to 6 hours, Tyler will be ok.

We Are Home

Luckily we got to go home last night. Since Tyler tested negative to RSV and pneumonia and the nebulizer eased his breathing they didn't need to keep him. YEAH! Tyler was even able to sleep in his own bed last night for 3 hours and then 4 hours before needing to eat. I had to hold him all day yesterday on my shoulder. Ben or my Mom wasn't good enough, he screamed when I wasn't holding him. Made for a long day. So I'm ecstatic that he allowed me around 6 hours of sleep. He still is very nasally sounding to me, but he is sitting happily in his bouncing chair. We go to see the peditrian at 11:30 this morning.

Accused of impersonating medical personnel. Again...

I'm writing this from the ED(Emergency Department) at Southern NH Med Center. Tyler has been congested for a few days and it came to a head today. He has been getting more fussy by the hour, sleeping and eating less. Today Sharron called the pediatrician and they told us to come in and get him checked out.

We have been here for about an hour and have already been through triage, where we caught the nurse off guard with an acronym that she didn't know. (PIE =Pulmonary Interstitial Emphysema).
Tyler's abridged history takes about 10 minutes and most of that time is the poor triage nurse typing. Then a new set of chest X-rays, where we were asked if we were professional X-ray techs.
We can't forget all the nurses who came running to see him. Apparently nurses can smell a cute baby from about 20'. We expect someone to come draw labs and most likely see how he does with a nebulizer treatment.

We're hoping it is not Pneumonia or RSV (this is where you knock on a nearby wood product). Either one would very likely put us back in the inpatient column. It's pretty clear that he is congested but overall his numbers aren't that bad. Hopefully we'll have some answers soon.

RSV and Tyler

Today Tyler had his first round of shots for RSV. RSV is a respiratory virus that is very dangerous to preemies. Most full term kids gets sick with RSV within the first 2 years. Most times these kids just have a really bad cold. Their lungs are strong enough to handle the virus and usually doesn't need more than Mom and Dad's supportive care. Preemies and other babies who have chronic lung or heart problem have a difficult time with RSV. Their lungs are not as strong as a healthy full term baby even if the preemie is strong and looks normal. Lungs develop much slower and are very prone to complications. A preemie with RSV will most likely need to be hospitalized. Pneumonia and death is extremely high in preemie's with RSV. So Tyler gets a $3K shot every month from November to March or April depending on the season. RSV has seasons up in New England just like cold and flu. RSV is very contagious and can be spread by sneezing, coughing, and will live on surfaces for over 6 hours. That is why you see our hands are very chapped at our house. This shot will not decrease the severity of RSV if he comes down with it. Instead it makes it harder for him to contract it. We still have to be smart with him. So we stay away from malls and busy shops. We all wash our hands nurotically and we use purell like it's going out of style. We also ask people to stay away if they are sick or have been exposed to someone who is sick. Since someone with RSV looks like someone with a bad cold, there is no way to tell if Tyler is being exposed to RSV.

We had excited neurosurgery news last week. Tyler's MRI looked "Fantastic"! The cyst that had holes poked into in August is barely seen on Thursday's scan. The shunt is draining that off relieving any pressure on the brain stem and the cerebellum area of the brain. This is one of the area's that could continue to give Tyler a hard time to develop properly. With the cyst going away...well it's awesome news for us. The weird area in the front right ventricle where we were concerned another cyst was forming has also cleared up. His over all ventricle size is slowly equalizing to were they need to be. It was an a huge day for us. And the icing on this cake is we don't have to see neurosurgery for 3 months and don't need another MRI at that visit unless he starts to act funny.

Tyler is doing beautifully to go along with this news. He smile and giggles all the time now. He is hitting all his developmental milestone appropriately for his corrected age. We are helping him out with some stretches to be able to move his head better because of the shunt. The shunt and "bump" stick out of his head on the right side making it hard for him to turn his head up and over it. Over a long period of time fat deposits and scar tissue will minimize the bump the shunt causes but for now it kinda sticks out like a sore thumb. I've had more little kids come up to Tyler fascinated by the shunt and ask questions about it while the parents take one look at him and avoid us like the plague.

Over the last two weeks, we've seen him gain more head control and is starting to raise his head off the ground when he is on his tummy. This has been the hardest milestone for him to hit. With the shunt, his tummy hurt for a while after the surgery making it hard for us to put him on his tummy. We are even seeing him being able to sit for a few seconds before crunching over. Then he will straighten up for a couple more seconds before he is too tired to sit. We are hitting the really cool stage where we see changes from little baby to big baby.

Tyler had is weight checked yesterday and weighted in at 12 pounds and 4 ounces. He grew a pound in just about 3 weeks. He is getting so big when I tell people he's 5 1/2 months they accept it. I don't get, "but he's so small" anymore. He is such a happy little guy to boot.

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5 Months Old

Tyler is 5 months today! Time in one sense has flown by and in another I can't believe he already 5 months.

We've had another full week of appointments last week. We saw his development Dr, neonatalogy, and audiology on Thursday. All went really well. We spent about an hour with development having him sit up, lift his head, turn his head, move his eyes in all directions. She did ask if there were any learning disabilities in the family and Ben and I just looked at each other and giggled. We told her Ben is visually dyslexic and ADD while I'm most likely audio dyslexic. Her respond was "you didn't give this child a chance did you!" Over all she was pleased with his development. So far he is hitting all the mile markers for a 2 month old baby, which he would be if he didn't come early. She did notice his neck being a little floppy and not holding his head up quite as nicely as she'd like, but isn't too concerned about it yet. An hour after she said this to us, Tyler held his head high for the neonatologist. Once again we are reminded everything is done on his terms.

It was a whirlwind visit with neonatal. The biggest thing is all the oxygen tanks and monitors are going back. We haven't used oxygen since the first week of August and we got fed up with the monitor alarming because Tyler figured out how to get the sensor off. Since August his oxygen saturation is between 97 and 100% so it's time to get rid of it. If he needs it again at this point he needs to be in the hospital because something is seriously wrong. One less thing to trip over in our house.

Our last appointment was with audiology to recheck his hearing. In the ICN his left ear referred meaning it needed to be tested again. So after an hour of quietly sitting in the dark rocking him, changing out the normal EEG pad for super sticky ones that need adhesive release to get them off, and holding the ear phone in his ear Tyler fell asleep for the test. Both ears can hear all the pitches and volumes. There is nothing wrong with his hearing. The ear drums react the right way and there is the right echo in the middle ear. We don't need a hearing specialist!!! We don't have to go back to audiology unless we think something is wrong down the line.

Early Intervention also came back out and was finally able to play with him. So far it's been a whole bunch of paperwork for the state. He was in a good mood for her and showed the therapist that he can do all the 2 month old milestones and is well on the way to mastering some of the 3 to 5 month milestones.

Over all things are going quite well and I'm hoping to see a slow down in the amount of Dr trips especially over the holidays. It will be nice to slow down some. We've been enjoying a lot of smiles, giggles, and cooing from Tyler the last couple of weeks. He is a very happy little baby despite always seeing a doctor. He keeps amazing us. (His sister is just as amazing to put up with all this.)

A Long Week

This has been a long week full of ups and downs. Everyone seems to be slowly recovering from colds. Thankfully Tyler never seemed to have more than a sniffle, especially amazing since I had bronchitis.

We had some good news on Tuesday from the neurosurgeon. Tyler finally has a normal feeling baby soft spot. His post surgery emptiness finally filled in last weekend giving him a nice round head with a slightly sunken fontanel. The MRI showed his ventricles and cyst are smaller. The only thing odd we saw was a pocket in the right upper part of his ventricle which hasn't shrank in size. We don't know if that is another cyst forming despite seeing no evidence of bleeding in Tyler's post surgery CT scan or if it is still a pocket of air trapped from surgery. If you line the weird spot up with the CT scan the air pocket is in the same place as this abnormality. So we wait a month and have another MRI. Worst case it's another cyst that they will need to fenistrate. They would go in the same place they have in the last 2 surgeries and if it's a cyst it's much easier to get to this one. If it's air we should see it dissipating over time. The surgeon keep commenting on how good Tyler looks. He was awake and alert for her, talking to her, and just looking around.

The other appointment we had on Tuesday was a meet with lactation to see if we can teach him to nurse. I haven't really tried over the last 3 weeks because he was rather bad before surgery and then there was so much post surgery pain I didn't want him to associate nursing with his tummy feeling bad. It took a solid 2 weeks for his tummy to recover. They moved his innards around to make room for all the tubing for the shunt and that tends to irritate the bowel. My little superstar latched on right away and really for the first time took a full meal at the bar. Since Tuesday, he's taking close to 75% of his feedings at the bar. In the late afternoon if I don't catch him early enough he's too fussy and wants a bottle. But all said and done I've been able to cut down to only 5 pumps a day instead of 8 and will be able to continue to drop pumpings over the next couple of weeks. I get around 3 hours of my life back!!!

We also met our new eye Dr this week. Thankfully we don't have to go to Dartmouth for this one. She took another very thorough look at his eyes with all the torture devices previously used on him. He screamed but overall allowed her to see what she needed. The first thing she said was he has huge symmetrical optic nerves. Going on to say it could be swelling from the hydrocephalus. It may go down now that the shunt is in. She also said large optic nerves can be a sign that a shunt has malfunctioned quickly saying that she doesn't think this is the case here. My reply was he could also have his mother's eyes with abnormallyy large optic nerves and will soon become a glaucoma suspect. Unfortunately, she agreed that could also be the case. As for this slightly wondering eye, that could just be he is only 2 months corrected age and the muscles just haven't developed enough control yet. We go back in a few months for another exam. Overall his eye look really good and we just monitor him and see what the wondering eye does and watch his optic nerves.

We also seen Early Intervention. A physical therapist and speech therapist came to see him. He had one of his great alert times for them and was cooing up a storm. The speech therapist was very excited with the amount of noise he made and how expressive it was. Tyler is able to move his arms and legs very well and equally. He can also move his neck the full extend despite having tight muscles. We have a simple stretch to do for him to help that. They did see his wondering eye and will recommend the MICE program for him. This program offers specialist therapist for seeing and hearing to come out with the regular physical therapist. At the end we heard that Tyler is displaying all the correct cues expected for a 1 month old baby. Hooray!!!

I'm hoping to relax a little this week. So far we only have one Dr appointment scheduled and that is another day up at Dartmouth. We see a development Dr, Neonatology, and Audiology all on Thursday. Now if only I can get Zoey (the dog) to get well again so I don't spend all week at the vet's.

They must have changed the child labor laws...

We got a letter from the insurance company on Saturday asking if they first surgery (popping the cyst) could in any way considered a work-related injury. Let that sink in for a second. DOB: May 23 2008, Date of admission Aug 27 2008. Can someone please name a job that Tyler could do at 4 months old?!?!? I know some investment banking positions are now opening up but yikes!

Overall things are going well. Tyler is looking great. His feedings have fluctuated some but I think that is related to the cold that our whole house is dealing with. His head looks great, about the same as when we left Dartmouth. The incisions are healing well. When he is awake and alert he's a whole new baby!

Ouchy

Tyler's stomach sutures are looking angry and red today. He is also irritable. This won him a long trip to the pediatrician. He's now on antibiotics with warm compresses to help get rid of the infection. We are all hoping the infection is just skin deep and not into his hardware
.
Otherwise he doing great. He's eating more than he did pre surgery per day. At this rate I expect him to be bigger than Rachel next month. He's over 10 pounds despite not eating for a day because of surgery. He spent much of the morning awake and looking around. He isn't sleeping as much during the day. Thankfully he is sleeping well at night and only waking to eat around 2 and 6 am. His right eye is tracking much better now and doesn't look like a lazy eye now. Other than painful tummy sutures, he seems to be a very happy baby.

This is a picture of both Rachel and Tyler before surgery. It took 2 months for her to want to hold her baby brother. She has become very attached to him now. I think she was more upset not seeing Tyler than being left by her parents. She is very concerned about his ouchy on his head and when he cries. She usually get right in his crying face saying "baby crying" or "baby hungry".

This is Tyler right after surgery in the hospital. We love the hat they put on him. It reminds us of the movie "The Christmas Story" where Ralphy has to wear the bunny pajamas. He needed to wear this until Monday night. It kept the bandage on his head and pushed the skin that was used to bulging out back onto his head. Most of his bump is gone now. What is left is were the valve and tube stick out of his skull and the tube snaking down ti his neck. His body and hair will grow around most of that.

Sh$t happened!

We're home. Last night a 7PM Tyler let loose. He took out 3 diapers before he was done. The nurse took one look and handed me a discharge summary, our ticket home. We finally got home at about 10:30 and to bed by 12:00. It is amazing how much better you sleep on an device that is designed to be slept on :-).

Tyler is looking good. I gave him his 4 and 8 am bottles and he sucked both down like a pro.

Waiting for Poop

Well Tyler is doing so well we just heard we can go home after some good poop. He is bright, alert, and awake quite often. As of 11 am he's eaten about 350 cc of milk in a 12 hour period. He's on track to eat over 700 cc today, slightly more than he did before surgery. His pain seems to be very mild, mainly when we move him around. He hasn't had morphine since yesterday afternoon and only a few doses of Tylenol.

The parents are doing ok as well. We are very tired for not having any sleep Thursday or Friday night. We did get a few hours last night. It was a big help to finally see our normal Tyler last night. We were very reassured and relieved.

No one knows what to really think about his behavior post-op. He hasn't exhibited the tremors since then and is acting his normal self now. No one can say he won't do that again, but they can't explain why he did it in the first place.

Sawed-off stepper motor.

Tyler's new shunt has a fancy valve. It prevents the flow of fluid below a set pressure level. Too much pressure is bad, too little is almost worse. If we were to let all the fluid out of Tyler's ventricles at once the ventricle wall would tear away from the brain and cause bleeding. There is also a link between inter-cranial pressure and skull-growth. Too little pressure and the skull won't grow properly.

Tyler's shunt is programmable. Doctors can adjust the pressure setting without surgery. So as he grows we are less likely to need to go in surgically to adjust the flow of fluid. One down-side of this value is that it is more likely to clog and require surgery to fix. We described how a shunt works here.

This is the device used to program the valve. The system is pretty ingenious. It works just like a stepper-motor cut in half. Most motors just spin when you apply power, stepper-motors only turn one "step" every time you send power to it. You'll find a stepper motor anywhere that exact control of speed or position is required. Printers, scanners, disk-drives, and robots all use steppers. All motors have 2 main parts the rotor and the stator. The rotor is the bit the turns doing the work and the stator is the stationary part. Usually the rotor fits inside the stator. In this case the rotor is now inside Tyler's head, the stator is in the programmer. The rotor has a series of alternating magnets on it. By alternating the magnetic field around it we can turn it in a very precise way.
The Arrow is the valve in the shunt and the 4 magnets outside make up the programming device.
One thing we now need to be careful of with Tyler is magnetic fields. Some studies have shown that a refrigerator magnet can lower the setting (just as bad as raising it). Some rumors I've seen indicate that some cell-phones, old-school telephones, microwaves, speakers etc can change the setting. This may get interesting.

Welcome back Tyler.

About an hour ago I was feeding Tyler. When we started he was a Tyler shaped person with a distant gaze and some faint Tyler-ish mannerisms. By the time he had finished sucking down about 80 cc (3 Oz) the baby in my arms was Tyler! His inquisitive eyes are back. He will again reach for hands and fingers, lift his head and look around when I burp him and will even smile for familiar faces. Most of his un-Tyler-ish-ness was attributed to the Morphine, residual anesthetic and being rather uncomfratable from surgery, but I think we both had a lurking fear that there was something more going on in that head of his. Tonight those fear are starting to ease away.

Tonight Sharron and I took turns visiting the ICN. I ran into one of Tyler's Primary nurses, his favoriate respiatory therapist and the nurse practitioner who came to pick him up in the helecopter on day one. It was nice to visit with familiar faces.

Finally Resting

It's been about an hour and half and Tyler is finally resting comfortably. He isn't whining or restless and he's been able to sleep without being poked, pricked, or prodded. Poor thing. He pooped earlier and they decreased his sodium intake. That has seemed take some of irritability away.

We have just gone for showers at David's House and working on going out to grab a bite to eat. We just had a consult with the Pediatric resident. Tyler was looking rather vacant. We decided that it is most likely a side-effect of the Morphine. He is also starting to eat more, just polished off a 50cc bottle(1.75 Oz). There is almost no chance of getting out of here tomorrow morning as we had planned, but if he keeps on this way we'll be talking discharge in no time.

He's slowly coming around to be more his normal self. It take a while for small babies to recover sometimes. I had to stop writing this an hour ago and since then he's eaten another 30 cc and watched me for a few minutes. He's once again laying in his crib so Ben and I are hoping to get out for an hour to eat something other than hospital food. I swear this place would be shut down if the food inspectors came for lack of edible matter.

A Very Long Night

Last night didn't quite go as smoothly as we all would have liked. Tyler came up very agitated and fussy which we expected. He just had brain surgery with a tube snaked down to his stomach. There is a whole world of hurt there. As we are watching him in that first 1/2 we noticed his eyes sun-downing and his whole body tensing up with no responses to us. We think he may have had a couple of seizures. Tyler came back form the OR to a nurse that has never worked with him before. She noticed the sun-downing but assumed that a patient coming in for a shunt would have sun-downing pre-op, Tyler did not. Ben had to go out a second time and demand that they page Neuro. Once the staff understood this to be all new things got busy here. The Neurology resident came running in, we had a rush CT scan, and a neurologist was woken up to come in and have a look. The CT scan showed good news, no new bleeding or any areas of concern. There were a few air pockets in his ventricles, but that is normal after this type of procedure. The decision was made to jack up his morphine, give him 100% oxygen (to help speed up the absorption of the air), and to give him Phenolbarbitol, an anti seizure med that also helps by taking the edge off so he can relax. I can't say he had a peaceful night, but he was kept as comfortable as we could make him. We are hopeful the seizures are a pain and post-op reaction and will go away when he feels better. Also having no nutriention for the better part of 16 hours before surgery his electrolyte levels are all out of wack. He finally took a medium size bottle this morning and gave me his hunger cries. They also are now supporting him with electrolites and sugar water to brings things back to normal. With any luck he should keep improving today. Hopefully we can keep his pain under control.

Surgery #2, Success!

Tyler is out of surgery. They anesthesia team is finishing up extubating him and he will be back in his room soon. We just spoke with the surgeon and she says he did great! It was a long trying day and we're getting ready for one really hungry little boy to come back to his room. They ended up installing a programmable shunt into the hole created for his last surgery.

We will watch him for a few weeks and adjust the pressure of the shunt valve as necessary. They have an electro-magnet that they put on his head to adjust the pressure setting on the valve.

Update: He's in his room now, looking great! He is on some O2 just while he re-joins the world of the conscious. Otherwise he's all set.

Feed me Seymore!!!!

Tyler has been NPO (No food or drink) for over 13 hours now. Not a happy camper. We just got word that Neurosurgery thinks we'll be in the OR between now(1:30 pm) and 4pm. They just gave him some Morphine to take the edge off of his hunger. We have been taking turns holding him trying to keep him calm. He's been getting IV fluids all night so there is no dehydration.

We we be three unhappy campers if he does not make it into the OR today. We are not liking the idea of torturing him all day for no reason just to do it again tomorrow.

Grr...

Waiting for Godot

Just like the play, it's frustrating. The hospital has a no vacancy sign up and people still come in with trauma's. The OR has been canceling scheduled surgeries to try to find bed spaces for all the trauma patients. So poor Tyler has had no food for 10 hours now and we still don't have a time for surgery yet. Poor guy just wants to eat. Other than that we have no new news. He is still getting a shunt.

Welcome to the PICU

We have just finished checking into the PICU up here at DHMC. The plan is to go in for a shunt tomorrow. We have no idea what time at this point. Tyler's ventricles are bigger and the cyst is the same or smaller. We were hoping to avoid permanent hardware, but this is where we are. This should allow the fluid to flow out of his head and make room for other things.

It's almost nice to go in to the ED when neurosurgery is expecting you. You get some dirty looks from the folks with minor household injuries when we walk in and get called in almost immediately. It is all for not when we end up sitting in a room for 6 hours waiting for a slot in the PICU.

After the standard formalities we are checked in. Tyler is now NPO for his "add-in" surgery slot tomorrow. We came in too late in the day for a real scheduled slot. Hopefully we will know what time when it has been assigned. Even then it is subject to change.

They have actual rooms here. There is a built-in window-seat thing that I'm going to try and sleep on and Sharron is now crashed on a cot. Tomorrow looks to be an eventful day, so I'm going to call it a night.

Get thee to a Neurosurgeon

Tyler had a regularly scheduled appointment with his Neonatology team today. Overall they think he looks great! Except for his head... Neonatology does not like the looks of his head and told Sharron to get him up to Lebanon. I'm writing this from the Emergency Department(ED). We just had another quick-brain MRI (we have lost track of how many he's had). It is so busy in here that the resident gave Tyler a look-over in the waiting room, the only other option would be to wait a few HOURS for a bed.

More to come as we get it.

Hi Ben

Ben is in California this week. I'm tired but holding up well thanks to some grandma help. Ben will be back Friday night. I thought he'd like some new pictures to look at of both Rachel and Tyler. Rachel is sporting her new "Cinderella Dress". She loves Cinderella and is going through a big dress kick. And yes she insisted on playing in the cold pond in the
60 degree air.

Tyler is doing well too. His head is still very sunken and the bump is smaller than it was last week. He gets his 2 month shots on Friday but other than that it's been a quiet week for us.

Tyler has had one of those he went to bed one size and woke up bigger moments to me. He looks huge again. He has grown out of his newborn size clothes. This week we are starting to see dimples at his elbows and a few small creases at his wrists. He isn't a chubby baby, but he is very long and has some muscle tone on him.

Take 2 on the Shrinking Head

Tyler still likes to keep us on our toes. For the last 2 weeks he's looked hydrocephalus. His fontinell was full and bulging, the sutures (bone plates) where spreading, sleeping more than I'd like, and his cries were not as forceful. Ben and I were hoping to get to the 22nd without having to take an emergency trip up again. On the 22nd he gets another ride in an MRI. From those pictures we decided if he needs another surgery. Could be a shunt or another round of hole poking in that cyst.

We woke up today with more of the same on his head. I went to work for 6 hours and came home and did a quick once over on Tyler. Oh my God, his head is sunken. The fluid is gone. His head isn't bulging or embossing anymore, the fontinell is sunken and very soft, by 6pm he's eaten close to 600cc (he normally has been taking 600cc in a 24 hour period), and very alert. The bump on the side of his head is also noticeably smaller and very squishy. I admit it, I panicked and called neurosurgery. How could that much fluid move in such short time.

Neurosurgery could not give me a good answer as to why. Since he does not have extra hardware in his head, they are not concerned that it will over drain. Most likely something clogged up the works and the fluid built behind it and the pressure finally moved it out of the way. So we keep watching him for any changes in his behavior. They must think I'm nuts up there. 2 weeks ago we rushed him up there because it filled up and now I call when it empties. I'm surprise I have any hair left.

Finally Broke Down and Bought a Freezer

This weekend we had to buy a freezer to put all the extra milk for Tyler. He still isn't nursing and I'm still pumping 8 times a day. I'm pumping about the same time he is wanting to eat so if I can get him to nurse, my supply is ready for him. I'm waiting for his cold to clear up and to see if his head fluid starts to go down. Once all this clears up one way or another, I hope we can teach him how to eat naturally. As long as we think he will have problems with his head, we need to know how much he takes in and when. Change in eating habits is a sign that the pressure is too much for him.

He is feeling much better as far as the cold is concerned. He isn't as nasally and he is able to take larger amounts at each bottle. With the cold he was having smaller more frequent meals. The fluid in his head is still increasing. We can tell by the bump on the right side of his head where the incision was and his fontinell is full again. Today his head even looks hydrocephalus, bulging head, big bump, and his forehead looks embossed again. You can see the bump on the first picture above his ear. We are mentally ready to take him in for surgery again by the end of this month. We have an appointment for a MRI and to see the surgeon on the 22nd. As long as he doesn't become symptomatic we will wait for that appointment and make a decision then. Unless the surgeon calls back tomorrow wanting to move the appointment up. I've yet to unpack the suitcase from our trip last week.

Rachel is doing well with Tyler. She is very concerned when he cries and always points out that he has an itchy on his head (she is referring to he bump) or calls it a boo boo. She is very good at coming up to him and announcing to us that "baby is sleeping" and then starts to tickle his feet.

She has decided the dog is a playmate and likes to dress the poor good dog up.

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 .