Reservations.

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

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

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

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

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

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

Haven't we been here before?

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

Five Weeks Old

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

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

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

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

Going Home (Just the parents this time)

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

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

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

Warning Warning, Danger Will Robinson!!!

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

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

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

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

Much ado about flooring.

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


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

Where is Mke Rowe when you need him?

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



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

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




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

Bed Downgrade (In a good way)

Tyler is now in an open bassinet! It's the same clear plastic tub that Rachel spent her first 2 nights in. No temp-control, no built-in humidity. It doesn't even have an electrical plug. There is also talk of moving to the carpet today. There are three areas in the unit. Critical, chronic, and long term. Critical has tile and the other two are carpeted. Tyler is still considered critical because of his head, but he is no longer on a ventilator, or connected to any IV's so he is able to move to long-term if space is available.

As for his head. The Neurosurgeon would like to have a shunt installed before July 4th. They keep throwing in the "If he still needs it" in casual conversation but reading the clinical reports that is a real long-shot. They will tap if he gets the symptoms back before we get there.

After a few days in Amherst we are back in Lebanon. I was nice to spend some time at home. We spent most of our time catching up with Rachel and preparing to go back to the Emerald City. For her part Rachel got to catch up on sleep, apparently staying at Grandma and Grampa's can really tire you out. We put her down for a nap on Thursday afternoon and she woke up Friday morning.

Rachel seems to be doing rather well. She wasn't thrilled about going for a ride with grandpa today, but that seemed to be over once she got to their house. Rachel has taken to reading books to herself. She took that to the next step on Thursday when she started reading to Zoey. After she came into the living room for her third book yelling "I'll be right back Zoey" I had to see what was going on. This would be what I found:


Tyler is doing great! His IV came out today. That leaves him with ECG, Pulse Ox, Nasal gastric tube (feeding), and a nasal canula(O2). That's quite a decrease from his days with a chest-tube. It is much easier to pull him out and hold him now, down to a 2 person job from3+. They popped the sky-light on his isolet yesterday and he's holding his temp rather well. He gets to wear clothes now, but the 0-7 lbs preemie outfit he's in here fits him like a tent. He's up to 3 lbs. 10 Oz. (1670 grams). He's had only one apnea so far today. Over all he's in great shape.

We had a quick drive-by meeting with the team today and confirmed what we had suspected coming up today. The ultrasound on Thursday didn't show any increase in the size of his ventricles. As long as he stays symptom free we will watch and monitor. There is another ultrasound and a brain MRI ordered for next week. The ultimate goal at this point is to keep Tyler in a stable condition for about a week and a half, when the Neurosurgery team thinks he will be big enough for a longer-term shunt (if he still needs it).

2 Steps Forward.....?

Sounds like this has been a great week for Tyler. Over the last couple of days, Tyler has ramped up his feedings and is no longer on any IV nutrition. He has also weaned down on his dependence on high-flow and may go off it completely tonight. Today Tyler's team decided to see if he could maintain his own temperature by leaving his bubble bed open for a while. He did so well, I hear he's in a big boy's crib. I haven't see it yet but I believe it's an open crib and he is now bundled up. They also took him off the drug to reduce the fluid production in his head today to see what happens. Tonight will be his last dose of the antibiotic and his IV can completely come out. If all goes well tonight and tomorrow, I'll see Tyler tube free. (Of course he will still have monitor lines stuck to him.)

When I called in this morning to see how Tyler did last night, I mentioned to his nurse we wanted to see neurosurgeon, the attending Dr, and the Nurse Practitioner face to face after we got the results of Friday's ultrasound. We want to see what every one's thoughts and concerns are and make sure everyone is on the same page with the next step with Tyler's head. I don't think brain surgery should be taken lightly. Trying to piece this together over the phone and quick talks with each Dr. doesn't sound like the right idea to me. When I called this afternoon, Tyler's nurse told me that his ultrasound was moved to today so that the official read would be out on Friday and we could meet in the afternoon to discuss things. I was amazed that they would move things around and to hear that all the Dr's are waiting to hear when we will be available to meet. Again this tells me Tyler is in the right place. We will be heading back to Lebanon tomorrow morning to start most likely the third attempt at surgery for Tyler.

My fantasy dream is that the ultrasound comes back normal and they are getting Tyler ready to ship to SNHMC to get bigger. Does any one have a pipe for me to put that dream in?

Tyler's new clothes.

Tyler got to wear a his first onesie today. He has lost enough lines and hoses to make it feasible to put clothes on him. He is still in his temperature regulated isolet so he doesn't need clothing, but it's really nice to see it on him. Gives us a sense of having a normal baby for a few minutes. His growth is on track and he is getting close to being able to regulate his body temperature. Babies need to be about 1800 grams (4 lbs) to have enough mass to regulate their own body temperature. He is a few ounces from that today at 3 lbs and 7 oz. Tyler may be able to control his temperature already, but with everything else going on and wanting him to use the calories to grow we will help him out with keeping warm.

As long as his head-size stays stable (accounting for normal growth) and he doesn't start with the monster apnea again we can stay out of the OR. The ultrasound on Friday could also get us back on the surgery path, but we'll cross that bridge when we get there.

It's really interesting (and often maddening) to see how different doctors have a different take on the same situation. Tyler's Neonatal team leans towards installing a drain/shunt. That is not to say they are pushing or driving that way, but when we ask for their opinion that's what we get. On the other side of the coin the Neurosurgeon is of the opinion that as long as his ventricles are at least not growing after the tap she did on Thursday and he is not showing symptoms we can wait until we have confirmed swelling or symptoms.

The consensus is that as long as the swelling is not causing symptoms it is not producing long-term damage (not a fact, but no one has been able to prove otherwise.). We decided to go with the wait and see. The longer we wait the stronger and more resilient Tyler would be for surgery. It is also possible though not likely that we can skip surgery if we buy enough time for the clots to dissolve. More probable is we are giving Tyler's head enough time to clear enough clot out so a permanent shunt can be put in. That way hopefully he only needs one surgery.



Tyler seems to be feeling much better than last week. He is more active and his strength is back. He spends a few collective hours awake and able to open his eyes easily again. He has quite an appetite and is letting us know when he is hungry. Sharron has been able to let him explore nursing a couple of times now. He already knows what to do but doesn't quite have the energy to fill his tummy. After a few minutes when he is tired he gets mad. He wants his tummy full, that is when we feed him from his nasal gastric tube. We are also amazed that he can pick up his head off the bed now. Today a nurse placed his head in one direction and when she came back it was facing the other way. We believe he moved it all by himself. Despite his A's and B's still, to us he looks neurologically very good.

We are going to try to spend part of this week at home with Rachel. She has been doing phenomenally well with her grandparents in Hollis. Some day we'll come up with a suitable way to thank them for everything they have done through all this. Tim sent a video to me yesterday of Rachel picking up a phone on his desk and talking to her mom and dad. When she starts to want to talk to us we know it's time to go home and spend some time with her.

Avoiding the OR again.

Today was a good day. (knock on wood). Tyler was very happy on his hi-flow setting at room air and a little bit of pressure. He is back on his feeds and is advancing daily. His head circumference is also staying steady.

Tyler was fed at noon today. I got to hold him for the next hour and he got very restless. He started smacking his lips and trying to put his hand in his mouth, wanted to suck on something so we gave him a binky. He went to town on it. We started to talk about offering him milk from the source. Ultrasound came in and I had to put him to bed. While they were scanning his head, we decided if Tyler was still awake we try it. Well he knew what to do. He latched on and started to suck away. He is unable to suck and breathe well enough to take a full feed yet. Everyone was ecstatic hear that he did latch on, most preemie's don't start putting that together for another couple of weeks. After a good 20 minutes of a suck here and there he finally settled out and fell contently asleep.

On the medical front, we also had a good day. We spent most of the day waiting for the results of the ultrasound. Ultrasound comes to bed side when they feel like and the radiologist reads the scan on their schedule as well. So we left for dinner at 5pm tonight and met the attending Dr in the hall. He had seen the scan on file but the official read wasn't in yet. We chatted a few minutes saying the ventricles were not significantly smaller than they were before. There isn't a clear path to take and the 3 of us decided we needed to hear from the neurosurgeon to make a decision about Tuesday's OR reservation. Again we had a slot in OR scheduled just in case we needed it. Around 7pm we got a phone call from the neurosurgeon. She was very confident that waiting is Tyler's best option at the moment. She got an official read and the ventricles are slightly smaller than his last ultrasound. He isn't exhibiting symptoms of building pressure; hard fontanel, spreading sutures, severe A's and B's, change in personality and feeds. All things he was exhibiting last week and not this weekend since the antibiotics and head tap. The risks of surgery now out weigh the risks of waiting. So Friday we will have another ultrasound and re-assess his head again. So if Tyler stays symptom free and the ultrasound on Friday comes back looking no worse we may squeak out of surgery.

So Ben and I are going to take our chance and go home Tuesday for a couple of days. Of course if they think Tyler needs us to rush back for surgery we will.

Father's day greetings from the Emerald City.

Today has been a great day so far. Rachel came up with Grama and Grampa on Saturday and stayed with us last night. I think she did rather well for her first night at David's house. It made for a nice father's day for me to bring her in to see her baby brother. Tyler seemed happy to get another lecture on the importance of Duckies from big sis!

Tyler is again nice and stable. He has been extubated and is on high-flow O2. Feeds are rolling along again at 13ml(2.5 teaspoons) every 3 hours. The updated culture report is back and we now know that his infection is sensitive to an antibiotic called Nafcillin. This means we can remove the other antibiotic and treat with the one that we know will do the most good. We have also pulled the PICC (centeral line), if that really is the source we don't want it in there anymore.

We have made a few tweaks to his meds and O2 and he seems to be doing just fine with it. Tomorrow we have an ultrasound scheduled to see what's going on in his head. We could be looking at installing the external drain, wait another few days and see or Tyler has cleared the clot on his own and we don't need to do anything. The last one is a long-shot but by no means impossible.

We have somewhat of a medical mistery going on at the moment. They pulled 2 blood clutures from Tyler on Thursday. One from his centeral line and a second from a surface vein on his foot. The centeral line culture grew, the foot did not. If the infection was far enough along to cause the symptoms we saw by itself both cultures should have grown. The same symptoms could have come from the preassure in the ventracles in his brain. The Neurosurgen drew off 12 ml of Cerebroalspinal fluid (2.5 teaspoons). At the rate he should be creating the stuff(close to 500ml/day or 2 cups) we should have needed to tap him again by now. So two possible causes of the symptoms and neither cause is clearly the culprit, and yet the symptoms are gone.

As for the "Emerald City" bit. Everything here is painted green EVERYTHING!

Staphylococcus aureus

The first culture is back. Tyler has a case of Staphylococcus aureus around his PICC (Central Line). They just got a new standard IV into his foot so that they can give him his meds, Tyler was not thrilled. We are all glad that we caught this in time and that we didn't make it to the OR yesterday. Surgery with Staph a would be really bad! The plan is to remove the PICC later today. Overall a good day, Tyler is alert and pulling at his vent tube. His head looks great with all the new room to move around in there.

Not so fast.

After my last post the neurosurgeon came up and suggested that we go ahead and remove some fluid to hold Tyler over until we can re-group and plan another go at surgery. In our meeting on Wednesday the option of a direct tap to remove fluid was tabled because repeated taps have been known to cause brain-damage (30+) making it a bad long-term answer. In our current case a few taps until a more stable drain can be installed is considered fine.

Once they got a whiff of infection they hit Tyler with broad spectrum antibiotics. He was deteriorating rather rapidly. The main suspect is his PICC (Central IV). The symptoms fit either increased inter-cranial pressure or sepsis. We knew we needed to treat the pressure and as much as they don't like passing out antibiotics waiting 36-48 hours for a culture would put us way behind the 8-ball.

The Dr. pulled 12ml of fluid from the Ventricles Tyler's head. It was brown in color which indicates that the clots are breaking up. It is possible albeit remote that the tap today may have bought enough time to get us beyond needing the drain. During the festivities today they also did a lumbar puncture and got almost nothing. The unofficial story is that this goes to proving the theory that a clot is preventing the fluid from leaving the brain and going into the spinal column.

We have an ultrasound planned for Monday morning, and will meet again and go over our options. The cultures will come back in 36-48 hours. Sharron and I are betting it's not infection. Any takers?

Woah!

[Tyler kicking back with no respiratory support.]

We were sitting with Tyler getting him rigged for his trip to the OR. Optimistic that the procedure was the right thing to do and would resolve his issues at least for the time being. He electivly removed respiratory support this morning (read pulled his own tube out) and was doing fine. All at once our house of cards came crashing down. His apenas went from bad to really bad, his temp went down (a sign of infection in preemies and newborns) and his pre-op blood-work didn't look good. 15 minutes before his scheduled OR slot we called down and canceled. The last thing we need is to go poking around in his head with even a hint sepsis on the loose.

He is back on a ventilator(intubated). Watching his recent apneas we weren't about to argue. Most last 20-50 seconds, these were lasting 5+ minutes. Before he was pulling out on his own or with light "Hey Tyler wake up", today he required "vigorous stimulation" and a few times an the help of an ambu bag. Infection was one of the counter-indications for surgery that we discussed with the team yesterday. After spending a night trying to get your head around the fact that your kid needs surgery it's tough to pull-out at the last second.

At the moment he is stable and resting quietly and we are waiting for the cultures to come back (~24 hours). We don't have to worry about apena overnight on the ventilator (it will breathe for him as required). Once we have the results back we'll re-group and try this again.

Tuesday night was rather hard for us parents. This is one of those times parents don't want their child to get A's and B's (Grades in school being the time you want them). A's are apnea's where one forgets to breath while sleeping. B's are bradycardias which is when the heart rate drops significantly. Most preemies have A's and B's because of their immaturity. Tyler has had a few here and there. In the past he has needed little if any stimulation to come out of it. Tuesday Tyler had Increased episodes of A's and B's that required more stimulation to come back. This is a sign that the pressure in his head is starting to affect him. When we got to see him Tuesday, Tyler was very happy to see us. He opened his eyes for us and was tracking to find Daddy's voice. I got to hold him and he settled down very comfortably. We were very happy to see these signs.

The fluid in Tyler's head that is causing all this pressure is spinal fluid. The ventricles in the brain produce close to a quart of fluid a day (4 quarts in a gallon). The blood clots have disrupted the natural flow of this fluid from the ventricles, down and then up the spine, and finally to the outside of the brain where it is absorb back into the body. We believe the area blocked is between the 2 small lower ventricles, which is causing the right and left ventricles to expand. They started Tyler on a drug that is designed to lower the production rate of the spinal fluid being produced. This is a temporary fix that has seemed to ease Tyler's symptoms. His A's and B's have decreased in frequency and severity over all. He was more alert and moving around more today. The problem with this is he gets a dose every 6 hours. The last hour before his next dose is when we start seeing the symptoms returning.

The team of Dr's, nurses, and surgeons assure us that Tyler isn't at risk right now for more brain damage. In the next breath they say we need to find ways to alleviate this pressure before we do put him at risk. As the blood clots break up and reabsorbs, the spinal fluid can get gritty and clog up the natural drainage in the head. Over time the clots will naturally go away and not cause any more problems. Because of the clot's placement and size, the time we need to absorb it is greater than time Tyler's head can tolerate the pressure from the backing up of fluid. This is not a blood clot that can get into the blood-stream and cause the problems most often associated with clots.

Thursday we go into surgery to put an external drain in his head. There are a few big reasons we are going with a drain over a permanent shunt right now. The drain will allow us to actually see the fluid that is in his head. If it's gritty, a drain is easier to keep clear where as a shunt can get block just as badly as the natural pathways. If a permanent shunt gets clog, it's another surgery to clear it. The drain will also give us a better gauge to know if he need a permanent shunt. He could only need the drain for a week or two and then no longer need any form of drainage. It may also tell us that he will need the permanent shunt. It gives us a clearer idea of what is truly needed in the long run. The main risk to adding a drain and is infection. The risk is rather low compared to the benefits.

Brain surgery sounds scary no matter which way to look at it. This procedure is rather quick, about an hour. The installation of the drain takes about 20 minutes of that hour and the rest is dedicated to cleaning and getting rid of germs. If this was an adult or older child, this procedure would be done at bedside rather than in the OR. Preemies are just that special. He will go directly from the ICN to OR and then right back to ICN to recover. He will have a little tube coming out of his head connected to a collection bag, very similar to the chest tube he had. (I think he is trying out different types of tubes). We should see results very quickly and he should get back to the normal Tyler days.

On another front, Tyler Thursday morning decided he was done with respiratory help. He pulled out this Hi-flow and told the staff that he wasn't interested in having it back in. So he is breathing on his own and room air. Yeah!!!! We won't tell him that he will be on a ventilator for a little while until he is recover from Anastasia.

Hurry up and wait.

We are still waiting for the official read of the MRI to make it's way down from "On High" (In this case radiology). We have a meeting at 4PM today with the team to layout our options and come up with a plan. We were warned that they have already booked an operating room time-slot. With the assurance that it is only because it is easier to cancel than it is to get one on the fly. No decisions will be made until we have our meeting today.

The diretuic they have Tyler on appears to be buying us some time. It can't solve the problem, but it can allow him time to work things out on their own. There are at least 2 built-in ways to relieve the preassue. We are hoping he can solve this on his own before we have to go in and help him out.

Feeds are continuing to ramp up and TPN is ramping down. We crossed the 50/50 point today. He is taking more of his nutrition in the form of milk than via TPN. He is still on caffeine to make sure he has energy to breathe on his own. Taking body weight into account he is on the equivalent of 2 and a half cups of coffee for an adult per day.

"You should feel lucky, it's the most expensive machine in the hospital..."

Tyler got to ride in an MRI today...

As if to remind us that he is still driving this bus, Tyler decided to change direction today. We have been monitoring the swelling in his brain pretty closely. We knew there was some bleeding that appears to be stopped now. Once the bleeding ends we faced the second phase which is where the ventricles swell up. This is often because the blood clots block the passages that allow fluid to drain into the spinal column. (For those who like to follow the medical side it's called Post Hemorrhagic Ventricular Dilation).

Yesterdays head ultrasound indicated more swelling. Today he started having lots of Apnea and got really lethargic. Both are signs of increased swelling in the brain. The MRI data is making the rounds around the neurosurgery department tonight and we will have a meeting tomorrow to work up the battle plan. Tyler is now on a brain-targeted diuretic which may help him re-absorb the fluid on his own, It's considered a long-shot with low risk. Another possibility is surgery to install a shunt. Because Tyler's brain is rather flexible and un-formed most of the risk comes from complications of the various systems of reducing the pressure not from the swelling itself. In theory the swelling shouldn't cause log-term damage and the bleeding has done all the damage it will do. As long as we can vent the pressure somehow without causing any other issues we should be in good shape.

Tyler was rather responsive when we went in tonight. He was looking around and tracking sounds well. Thanks to a recent thunder storm that took out utility power the lights were out and he had an easier time looking around in the lower light. His color is good and other than being lethargic he's our normal Tyler. I would note it looks like he has one hell of a hangover right now.

We were assured that if Tyler was in immediate danger he would already be in surgery. Tomorrow we meet with the Neurology and Neonatology teams and make the plan.

More as we get it.

"Let's do the time warp again."

Life in the ICN is nothing less than surreal. I now have a new appreciation for what Dali was thinking. The nurses work 12-hour shifts (7 to 7). More than once we have seen 3 nurses covering Tyler in one visit. It is rather easy to loose track of which day or even month it is. You can sit down and 8 hours later realize the day is gone. Waiting for rounds or specialist visits can easily take hours.

This disassociation with reality makes it rather difficult to strike a balance between our life, spending time with Tyler and spending time with Rachel. Rachel did really well on her first visit with Tyler, but that will only be good for 5-10 minutes a day. The best thing we can do for Tyler is touch, hold and talk to him. The hard part is finding quiet stable times when it makes sense to take him out of his isolet. Finding time when he is awake is even harder. Depending on what is happening on any given day Tyler us usually only awake for between 30 minutes and two hours.

This week are going to try and bring Rachel up to Lebanon for a few days. Sharron's farther and step-mother are coming out as well. Hopefully we can work out the hand-offs that will keep Rachel occupied and happy while still giving us some quality time with Tyler. The Doctors indicated during our first week that it is very important that we try and keep some level or normalcy in our life. That is hard to do when you can only be in one place at a time.

Tyler is doing great! The nurses say he is LOVING Hi-Flow. They decreased the Oxygen flow and O2 mix (2 LPM @ 24%). He is getting closer to room-air every day. On the "other" front Tyler has moved on to the next stage of diaper loading, indicating that his bowels are coming up to speed. Feeds are up to 7ml 12 times a day.


Queen of the hill Sunday night at the compound and making tea for Zoey this morning.

Look Tyler, A Ducky!

Rachel, meet your baby brother today.
She did amazing today. I was worried that the whole scene would be a little scary for her. Rachel saw me and was excited to hear she had to wash her hands in a huge sink with sudsy soap. Rachel was excited to see daddy and then realize he was holding something, Tyler. At first she didn't spend a lot of time looking at Tyler but she did hear a crying and said "Baby crying". Then she and I went to find lunch.

Daddy was able to hold Tyler a little more freely today. He graduated from a Cpap to a Hi-flow oxygen system. It is a lot easier to hold him. The tubing for Hi-flow is a lot more flexible and won't dislodge from working right. I can even offer Tyler lunch direct. He won't have enough skill to make that work yet, but it is a step closer.

It was great to see both of our children in the same room for the first time. It may not be our ideal situation, but it was still healing to have all of us right there. After lunch, Rachel was able to focus a little more on her new baby brother.



The family of Duckies lives on the front desk in the ICN. Rachel met one of Tyler's doctors by the desk and she went into doctor shy mode. It was great that this doctor was kind enough to get down on her level and try to make her feel more at ease. After a failed high five and hand shake, he asked her if she like duckies. That did the trick. She got to hold a ducky and decided that Tyler needed to see it.

















Cpap















Hi-flow

These two pictures are showing the greatest change to Tyler's respiratory needs. Yesterday he was on Cpap and required to wear a very tight hat to tie rather large hoses to his nose. There was also an adhesive nose guard to make a tight seal between the nose and the prongs. The nurses he has had over the past day or two have gotten tired of constantly putting the Cpap back into his nose. Quite often Tyler would pull the prongs out of his nose and put them into his mouth. They keep saying that if a baby is fighting against a respiratory system it could be a good sign that they are ready to advance to the next step. Today he advanced. The new rig is a small tubing similar to people who uses oxygen. There is a little bit of adhesive under his nose to keep the tubing in place and that is it. This is really the first time in over a week, I've seen Tyler's head. The Hi-flow system allows Tyler to do all the work breathing and provides a bit of oxygen when he needs it to keep his saturation levels up. He may need to go back onto Cpap if he gets tired or if he can't keep his blood gas levels in the acceptable range. Going back to Cpap will not be a set back, it just tells us Tyler isn't ready yet. If he doesn't go back, it becomes a great achievement.

The other big achievement this weekend was being weened completely off fentanyl, the sedative. We have been weening him off that for about a week now. Tyler does get rather tick off when we change his pants or move him, but calms down very quickly when we are done or hold him in a calming pose. Infants this young will calm down from normal over stimulation by holding their arms down to their chests and their legs bent into the fetal position. A position similar to being in the womb.

Tyler, Rachel, and their parents are doing rather well considering. We are all a little tired.

A full rich day.

Lots going on in ICN land today. Yesterday and today they are up to %90 of capacity. There was a lot of activity next to Tyler's bed yesterday that kept his vitals higher than normal for most of the afternoon. You could see the energy in Tyler's stats he seemed very fussy with all the activity going on around him. This tells us he can hear, see, and/or sense things around him. Today things are more settled and Tyler was chilling out when we came in.


I see this pic and instantly think of floating down a slow river in an inner-tube, feet hanging over the side (don't forget the frosty beverage).

The only major item to come out of rounds today was that he is doing well and there is lots of talk about removing CPAP, most likely moving to high-flow O2.
Similar rig, but less bulky nose-piece.

Every day we get a better feel for the positions Tyler likes and doesn't like. He is not a big fan of being on his back. We can get about an hour maybe 2 before he has squirmed out of all his bindings and starts getting fussy. As much as Rachel hated being swaddled as an infant Tyler loves it. Can't say I blame him, the plan has him inside mommy for another 2.5 months, not alot of elbow room in there.
Wrap him up tight and he's very relaxed. Once he breaks free a simple hand on him ofter will keep him calm for a while.


Feeds are advancing again. He is up to 5ml(cc) of milk every 2 hours. For those of you not on the Metric band-wagon yet, 5 ml = 1 teaspoon. The 24 hour total today is about 60ml(1/4 cup). Tyler's feeds advance 1ml every day so tomorrow it will be 6ml every 2 hours. About 15 minutes before his next feeding you'll see Tyler starts to suck on his feeding tube until his tummy is full. Were on the look-out for the first real poop. That will be a good sign that his intestines are up and running.


He really loves being on his belly. It's still aginst the rules for those of you playing at home. Tyler is a trained professional (and he's rather well monitored.)

I'd like everyone to please welcome our pediatric neurosurgeon...

Friday is Tyler's weekly head ultrasound day. The report last week was very similar to the first one. Not good, but no worse. Today's images were rather frightening to the un-trained eye. The ventricles had swollen up a good deal. According to the docs we are not in the danger-zone. Little brains are mostly water and don't really mind getting shoved around all that much. Swelling in the brain is never a good thing, in Tyler's case it is not yet dangerous. We had a neurosurgery consult today they plan to monitor him closely.

We will begin twice-weekly ultrasounds and daily head circumference measurements to make sure things aren't getting any worse. If they do we may be looking at installing a shunt. This is a line from the ventricle in the brain to the stomach to allow the fluid to drain. Even installing a shunt is considered rather safe and without complications could result in no ill effects.

Today's results really do not change Tyler's prognosis. There is no evidence that the larger ventricles will cause any significant damage or not. We are still where we were last Friday, waiting to see what happens. Most babies who have this condition and last a month without having a shunt install usually don't need one. Babies that do have shunts installed can grow up to lead perfectly healthy happy lives.

Looking at Tyler you would never know any of this was going on. He looks bigger today and his color was great. Everyone seemed to agree that his reflexes were fine and his reactions were good. We are also watching food intake and output closely, preemies often have issues getting the gut primed. So far things look good, but one nurse told me today that they never trust the baby on this one. Show me the diaper!

Everyone is well

I had a check up today that went well. The left over pain from my infection is starting to go away. The only time I feel it now is when the Dr pushes hard on it or when I walk to fast for too long. All things I can easily avoid.

Tyler is doing well today. He is resting comfortably and getting larger feeds. More food equals more poop. Right now he needs a little help to get the poop out. We are hoping by the time we get back there on Friday, Tyler will be able to poop on a regular bases. That will show the GI track working and will lower his bilirubin levels.

Rachel is also doing well. She took a 3 hour nap for us when she got home today and went to bed close to on time. Ben and I were all ready to play and she decides she needs sleep. Well there is always tomorrow.

Ben is also doing well, just tired.

Line count.

Tyler has a few lines in him still. The biggest one is a PICC, Peripherally inserted central catheter which he gets TPN, Lipids, and most of his meds. A regular IV in his right arm, which they gave him the heart medicine. He is finished with that med, and I assume it will come out soon. He has five senors on him. Three ECG leads, electrocardiogram to monitor his heart rate and breath rate. One pulse oximeter which monitors his heart rate and oxygen saturation. The fifth lead is a surface body temperature sensor so his bed can adjust it's temperature. Tyler also has an oral feeding tube. He is too young to be able to eat and breathe yet.

The most noticeable connection right now is his CPAP. He needs to wear a special hat that ties the tubes to his head and lock the nose prongs into his nose. There is a blue tube and a white tube attached to either side of the nose prong connection. The blue side is the source of his air and the white side is the release for the overflow in pressure. There is a jar of water that the end of the white tube is submerged into. The water is how they adjust the pressure of the air going into his nose. The goal is to have the water constantly bubbling because the overflow of air is going through the water and not out of his mouth or exploding his lungs. Tyler likes to challange his nurses to create different ways to close his mouth; binky in the mouth, chin straps, wash clothes under his chin.

Now that Tyler is on the CPAP it is much easier and safer for us to hold him. Let me define easier. It takes two nurses to move him and make sure his CPAP stays connected as one of us is sitting in a chair waiting for him as the other one helps move his bed, close his bed, and move the chair in a position that doesn't rip his poor little nose off. All in all the process takes about five minutes to get him and everything situated for about a 45 minute holding session. And it is very much so worth it. All the doctor's, nurses, therapists believe in the healing power of touch here. (Ben says, slapping someone on the forehead screaming "Demons be Gone" or making the V8 sound isn't what the healing power of touch means.) The more babies are held even with all this equipment on them, the faster they heal, the more content they are, and the calmer the parents are. So we plan to make the most out of holding Tyler.

Quiet Days with Tyler

Sorry we haven't posted much in the last couple of days. Tyler has been very stable and cooperative for us. We got back mid Sunday afternoon and found him resting very comfortably on very low settings on the high frequency ventilator. Essentially he was breathing the same mix of air as we do and the pressure it was being thrown at him was below the lowest that machine could handle. So while they got the CPAP system ready and the bed cleaned, I got to hold my baby boy for the first time since his unexpected arrival. I had him in my arms for about 45 minutes. He would watch us for a minute than fall asleep for a while. If someone talked he would open his eyes again and then sleep. It was so therapeutic for both of us. He was calm and relaxed looking and I got to hold my boy.


















Unfortunately the calm had to end with a very angry little boy. Not only did they move him off me, but the pulled out his breathing tube and hooked up the CPAP to his nose. He cried, fought, squirmed away, everything in his little power to protest being fussed over. They put the CPAP in around 5 pm. It took some doing to get him completely settled back down again. Around 10pm that night we shut off the Biliruben lights and swaddled him very tight with his first binky. He likes to breath through his mouth and the binky provide a great plug to make the CPAP work better. Since then his Oxygen is back to just above room-air (26%), his breathing is strong and sats look great!. At rounds this morning the docs decided to let him hang-out like this for a few days more.













has closed Monday, we came in to Tyler looking great on CPAP. They rechecked his heart with another ultrasound to see if PDA significantly. We still don't have actual reports from radiology, but everyone here believes it is significantly better. They don't hear the murmur and Tyler is able to maintain his oxygen levels beautifully. If there is still a large PDA, they are not going to do much about it other than watch it. In the afternoon, Daddy got to finally hold his little boy. I'm not sure who was in danger of falling asleep first, Tyler or Ben. They both were very comfortable and happy. Made me smile.

The Developmental therapist came in today and gave us some more good news. First Tyler is more body responsive. When he's not happy he wiggles or cries, some babies use their O2 Saturation to show displeasure. Do something they don't like and their O2 Sat tanks. Tyler keeps his O2 nice and high the whole time and kicks, flails and cries to show his displeasure. He also demonstrated that he adjust to discomfort. When you take his temp he'll be fussy for a moment then relax when he has acclimated to the placement of the probe. It's like putting on a watch, for the first day you notice it all the time, after a day or two your brain acclimates and doesn't register the constant presence of the watch. She also pointed out that his jerks and spasms that have had Ben worried are exactly what she would hope to see at this point. As his neurons get wired in signals will travel at different rates through different nerves.

Tomorrow we are planning to go back home to have a few fun and relaxing days with Rachel. I'm hoping she will not be too bored without her cousins and Grandparents. Overall I think she is having a great time playing. She was very happy to see us this weekend and seemed to not overly cling to either one of us.
The picture of Rachel on the swing is at David's House when I was still pregnant. The other picture is one she asked Daddy to take to send to Mommy. She is sweet. By the way if you've tried to reach me on my cell phone, it's been broken. It works now.