Our 1st Follow up Visit and 4th OR appointment

Tyler looks great. He is over 6 pounds now and loves to be out of the hospital. He has been having a blast at the beach being held by parents, Grandparents, Great-Grandma, and Great Aunt and cousins. He has decided that sleeping in his bed is not nearly good enough now. He is up a lot at night. I think it's from the lack of noise and he loves to be held. He is eating much better this week and now looks like a newborn baby instead of a preemie. The butt cheeks have finally arrived.

Going to the beach with everyone also has helped Rachel adjust to Tyler and Mom and Dad not solely focusing on her anymore. There has been enough going on here to allow Rachel to come to Tyler on her terms. Everyday she has shown more and more interest in him. Now she will go up to him and pat his head or rub his tummy. And of course, she is having a blast running around after her cousins and playing in the sand.



We had a marathon trip at Dartmouth today. He saw the eye doctor for his second to last torture session. His eyes are developing normally and the in two weeks he will have his final check since he will finally be full term in age. Tyler and Ben had a great ride in the MRI machine today. While up at the ICN, he would be placed into the blue burrito to keep him still. For some reason the MRI office doesn't have that. Ben was asked to wear scrubs again and lay down on his stomach with his arms stretched out to hold Tyler's head. Good thing it was a quick scan because a baby can move his head despite a firm grip. From there we met with one of the Neonatal Dr's and the neurosurgeon. Everyone was very pleased that Tyler doing so well.

With that said, we are waiting to hear from neurosurgery about appointments to get a full MRI and then to OR. Yes, this is the 4th threat of brain surgery. It seems that we have cleared the blood clot problem and moved onto the cyst problem. The cyst close to the brain stem has gotten bigger and is blocking the pathway to allow the fluid in his ventricles drain naturally. (Haven't we been here before?) This weekend Ben and I noticed the fontinell filling up again. So we expected that something was happening in his head. The MRI will get a very detailed picture of his head including the exact locations of blood vessels and where they can get to this cyst the easiest. Depending on the easiest path to the cyst will determined what type of operation he will have. If there is a small window, they will put a shunt into the cyst. This is different than before, where the shunt was going into the ventricles. Again this is permanent and is prone to clogging and having multiple operations. If the cyst is easy to access they will punch whole all over it and allow it to drain without adding plumbing. In the long run this is a better option. He isn't showing any clinical signs of the pressure affecting in neurologically which is good. Ben and I are glued to our phones to figure out the scheduling. My bet is this time next week he will be recovering probably back at ICN.

One the positive side, Ben and I can allow the expensive babysitter work while we get a couple of nights sleep again.

Busy Settling in

This has been a busy week for us. We finally know what it is like to have a newborn with a two year old. It does not add to a whole lot of sleep. We are currently getting up about every 3 hours. We are so used to being able to sleep while Tyler was at the hospital, we didn't have much preparation for sleep deprivation.

Tyler is doing great! He settled in Friday very quickly and seems to love being out of the hospital. We knew he was going to be a cuddle bug while he was in the hospital and he takes advantage of being held now that he's home. He has some great alert times where he is looking around. He is starting to watch his sister and loves to look at himself in a mirror.

I saw improvements in his respiratory immediately. Since Saturday, I don't see him swinging his oxygen saturation levels at all. The only time he desats is when he's eating or pooping. We've even taken his cannula out of his nose for long periods of time and he still sats between 93-98%. He still has oxygen to eat and while we are trying to sleep. I don't see him needing the oxygen very long. Which is great, because hauling tanks and a monitor around is really a 2 person job still.

He is doing ok with eating. We are watching his weight like a hawk. The extra iron and vitamins are upsetting his stomach and causing him some constipation like symptoms. When this happens, he doesn't take much food in. He has lost a few ounces since he's left the hospital, but everyday I see him improve his eating habits. We must remember he had only been eating everything by mouth for 3 days before being discharged. I've watched him go from taking an hour to drink 60cc of milk to taking 40 minutes over the last week. He will get faster and stronger at eating.

Right now if we aren't changing some one's diaper, feeding a child or ourselves, or trying to catch a nap, we are seeing a nurse or a Dr. Tyler has a visiting nurse coming in a couple of times a week to get his vitals. We also saw the pediatrician this week and will again next week. Next week we are going back up to Dartmouth for a day of follow up visits. So to say the least, we are busy and tired but very happy to be home with everyone here.

Home on the range

(Tyler in his going home clothes, note the helicopters on his shirt in honor of the way he got to DHMC)

Friday was a pretty powerful day. Walking out the front door with Tyler was a new experience for us. This was the first time Tyler was outside on his own (without the benefit of a transport isolet). Once we got all the paperwork finalized and started out the door it hit me that we were now working without a net. The drive home was un-eventful. We made it home just in time for our "party". The ICN had organized a visit from our Oxygen supplier, The local EMTs and One of the ICN Nurses. We got our supply of oxygen all tucked away and verified that we knew how to run everything. The EMTs now know all about Tyler's case and what they are most likely to encounter if they are ever called. We're very glad they came as they had the wrong location on-file and we had to chase them down. The ICN nurse was there to make sure we were all tucked in and ready to go. (I'm carrying the O2 and Monitor. Sharron has the important bit :-).

We are now trying to get into a routine. With a bit of work one person can carry Tyler and all his gear. Most of the moves around the house take 2 people at the moment. We were able to get to our act together and visit my parents on Sunday night. After 2 hours of loading the car and setting up for the drive. Today we cut the load-up time in half and headed our for our first visit to the pediatrician (that went well too).

"Medically cleared for discharge"!

What a great feeling to see those words on Tyler's chart this morning. T's are crossed, I's are dotted and the car is loaded. We are waiting for one last turn at rounds and we will be on the road home.

I don't have words to express the gratitude we feel for everyone how has helped us along the way.
The team SNHMC in Nashua, Everyone here at DHCM ICN,BP,DHART.

Thank you!

More (and pictures) when we get home.

Getting closer to the Big-D

As in discharge. Today was a very productive day. We have been trained on the equipment that we will be taking home Oxygen and a PulseOximeter. We had a discharge planning meeting to get all of our ducks in a row. Tyler failed his first car-seat test so we will likely have to take him home in a "Car bed" Like a car-seat but he lies down. He is just not big enough for the seat we bought when we thought were only dealing with the standard full-term size baby.

We have done more paperwork this week than I usually do for taxes every year. His hearing test is scheduled for tonight and he just had his puppy shots (the standard newborn vaccines). The list of to-do before discharge is getting much smaller. We are starting to see the light at the end of the tunnel. We just hope it's not an oncoming train. It's rather scary to realize that we're getting flying solo soon, without a team of nurses behind us 24/7. Tonight we are in the Koala suite. It's a room where parents can spend a night or two trying out everything they need to care for their child all just one button away from lots of help. We are the only ones watching his monitor tonight. We are doing everything we can to be ready to leave when they tell us that we can go.

We have some new pictures but I am in the process of breaking in my new laptop so I don't have a way to post them yet. Stay tuned.

A Light at the end of the Tunnel

It looks like our time at the hospital is drawing to a close for this trip. The last couple of days have really been focused on what we need to do for discharge as parents. Tonight and tomorrow night I will be staying at the hospital to feed Tyler 24/7. He is doing great with feeding on his own. He will be getting the normal newborns shots sometime in the next 24 hours. We are meeting tomorrow with the supply company to learn about the home oxygen and monitoring systems. So if Tyler keeps behaving and depending on the results of the most recent MRI, I believe we will be head home with him soon.

Another good day.

Tyler has grown like a weed in the last few weeks. He is over 5 1/2 pounds now. He is starting to have a Buddha belly when he has just eaten. Which, by the way, he's doing great with. Yesterday he gained 135 grams in one day. So he is getting plenty to eat while he's nursing.




















Same stuffed penguin. These pictures are taken a month apart. Oh the bars you see on the side of the big Tyler picture are the bars on his new big boy crib. Not only are we working on feeding, but we are also trying to simulate a more home like situation. That way when he does come home, hopefully he won't be complete stressed out. Ben will bring up the mobile and a crib mirror for him to put in this crib so his home crib will be more familiar quicker.



I've also put Tyler in a bouncy chair for about 20 minutes today. So far it wasn't his favorite thing. But he tolerated it well with his oxygen saturation and let me know when he wanted out by fussing. I have also held him on my shoulder so he can look around. He has very good control over his neck and head for someone who isn't suppose to be born yet. He can lift his head up for very short periods of time to move it side to side or just to look around. He was fascinated looking out the window at dusk tonight.

His motions and movements are becoming much more fluid and purposeful. And his hunger cues are quite obvious. With any luck we may be looking to bring him home around his due date.

A Superstar in the Making

Yesterday Tyler had an amazing day. We ab-libbed feedings all day yesterday. We took the nasal feeding tube out and just waited for him to wake up on his own to start the diaper change process and to nurse him. He visited with Rachel for a short period. She thought she'd help with a diaper change. She was ok until she wanted me to hold her and pitched a fit. We expect this and are prepared for a strong willed jealous child when we do go home..

Most preemies shut down for 48 hours after an eye exam, so we didn't expect too much from him yesterday. He had an eye exam on Wednesday. If anyone has seen one of these exams, it looks like a military torture procedure. They clip the eye lids open, stick a probe in, and shine bright light into dilated eyes with out being sedated. So it's completely understandable that a baby doesn't want to wake up for a long while. Tyler was a little sluggish waking up in the morning and early afternoon. The evening and night feedings, he woke up on his own and opened his poor little eyes for me. He only lost 50 grams yesterday. It sounds like everyone expected him to have lost more. They did feed him by tube last night so I could sleep and today we are ab-libbing again.

Already he had a good awake time and nursing time at 10am this morning. I'm already thinking about signing him up for burping contests. He let one out and I swear it had to been someone else. So most of my days will be spent at the hospital so when he is hungry we can nurse him. Sometime soon I'll even be here at nights to establish night nursing. Once we are comfortable with him nursing well, we can introduce a bottle so I can get out of the hospital and someone can feed him with a bottle.

We've kinda brushed over a couple of important topics the last couple of days. His head issues and to shunt or not as well as discharge. Right now surgery is on hold indefinitely. His most recent MRI clearly shows smaller ventricles and fluid movement to the outside of his brain. Again the fluid is produced in the ventricles, goes down the spinal cord, back up the spine, and absorb in the area between his brain and skull. These changes are very encouraging that he could resolve this without surgery. He will get another MRI next week to check on the progress.

He also has a two cysts forming in his brain. These are normal after have a bleed in the brain matter itself. When bleeding occurs in the brain matter, a cyst forms to clear out the blood and afterwards it becomes a hole. The damage to this area was done when it bled and brain tissue won't grow back. They are small, but we will also watch them to make sure they don't get too big and block the fluid path again. He is not out of the woods for a shunt yet, but we are not going to put one in until he clinically needs it.

The last couple of days, we have been focused on getting the rest of the discharge list completed. He came off his caffeine this past Monday. So this coming Tuesday we can start the A and B countdown. He has to go seven days without any apnea's or bradicardias. These have become very infrequent and mild over the last 7 days so we are fairly confident that he will accomplish this in a few weeks. Tyler also has to be taking all his nutrition by mouth, either nursing or bottles. We are currently working on that and expect to have that figured out in the next week or two. He can manage his own body temperature so check that off the list. We are seriously looking at Tyler being able to come home in the next 2 to 3 weeks. Ben went home this weekend to set up the cradle and swing. General a baby is coming home things that I wasn't able to do before I went into the hospital.

And it's hard taking pictures of Tyler while holding him. I'll try to get one today when he is awake if I can.

This just in!

The official read on Tyler's MRI is in. His ventricles are getting SMALLER!
We also see new fluid on the outside of his brain which indicates that the clot is less of a problem and more fluid is following the standard path. At the moment we are now focused on the standard baby stuff, shots, hearing screen, eye-exams etc. We are still going to be here for a while (2 weeks at minimum). There is still chance that he will need a shunt, but at the moment we're going to monitor and move towards discharge.

A whole lotta nothin'

Tyler is asleep on my lap now. He is wiped out after a really good visit with mommy. So good that we decided to cut his tube feed in half. Everything is going as well as expected at this point. Tyler's O2 is so low that they don't have a regulator that can measure it. It is literally low enough that it is a toss-up if the canula is blocking his airway or the O2 they are giving him makes up for it.

My parents are coming up tonight with Rachel. We are going to see if we can get into a routine with Rachel here. We are getting close to a point where it will be advantageous for Sharron to nurse Tyler at as many feeding as possible. With his head apparently under control we are starting to focus at the other items that will keep us here once neurosurgery releases him.

We have the Amazing Shrinking Head Again

Well we called in and Tyler's head has shrunk an half cm. It has grown over last week some, but nothing alarming. There could always be human error in measuring. Plus his head has to grow along with the rest of his body. We are heading back up late today to hear what the MRI said and to plan the rest of the week.

A Few Days Home

We are home for a few days. Tyler is doing extremely well. He just needs a whiff of oxygen and is on lowest setting on low-flow. The only reason he is still on it right now is he still swings his oxygen saturations. The connection to an oxygen source allows us to give him some oxygen when he needs a little help coming out of a desaturation. He is feeding well and on Friday weighed in at 4 pounds and 13 ounces. He has had a few very good nursing visits. Again, he is surpassing every one's expectations on how well he has been able to nurse. The suck, swallow, breath combination is extremely tough to figure out and most preemies don't start to figure that out until 34-36 weeks gestational age. Tyler was 34 weeks last Tuesday and doesn't drown himself when nursing. We had a couple of visits that we felt he got a large amount of milk while nursing so we took some milk out of his nasal tube feed so he wouldn't get over stuffed. So despite his head pressure, Tyler is making some real progress.


We have seen quite a few alert times with Tyler. His eyes open up large and he quietly takes in the world around him. He still keeps very close tabs on where Daddy is. He really responds to Ben's voice and likes to watch him. The nurses have told us they have seen longer alert times over this week. We believe he sleeps a lot because of the pressures in his head. So it is great to hear that Tyler is spending more of his time awake.

This picture actually shows the swelling of his head. His forehead and the top front of his head is were all the fluid is pushing up the fontenel. They tell us his forehead will be less puffy once the fluid has been drained out. This picture also shows how well his face is filling out and a baby double chin is starting to form. The butt cheeks are still missing, but the thighs are also plumping up. When I hold him, he feels heavy like a baby now.

This is a normal picture of Tyler's favorite pose for the ultrasound pictures we have. We have a shot of him with his hands covering his face from every ultrasound I had. This was how he responded as we said "see you later" before coming home.

The 4th of what?!?!

It seems like just yesterday we were making our way into June, and here we are in July. Tyler had his own version if Independence day today. He spent about 10 minutes au natural. Free from the oppression of tubes, wires or sensors. Today he had his first bath! His nurse today was shocked that he hadn't had a bath yet. With everything he has been through to date it is understandable. So today he got a full cleaning.

He did great without O2. He seemed to enjoy the water too!
You might be an ICN family if... (apologies to Jeff Foxworthy)

• The nurse presenting your child's case at rounds asks you if they missed anything. (Extra points if they threaten to make you do it next time)
  
• Rounds is as much a social event as it is a medical one.
  
• You can tell when it's time for a diaper change based on O2 stats alone.
• You track breast milk stored in your freezer in liters.
• You think a 6 pound baby is huge!
• You find yourself wondering where an entire month went.
  

Go with the flow (low-flow that is)

Tyler is doing great! Today at rounds we decided to try moving from hi-flow to low-flow for his respiratory assistance. In recent days he has been really starting to swing his Oxygen saturation. We were concerned that this may be related to the pressure in his head, but on closer inspection we think it was the humidity from his high-flow condensing and flowing up into his nose. I don't know about you but I have a hard time breathing when I get water up my nose.

Most of the time he is doing really well but the swings were starting to become a concern. Low-flow is 100% O2 at a much lower volume. He was getting 1 Liter per minute of 21%(room-air) on high-flow, now he's getting 100% but at a much smaller rate (25 cc/min). Without the humidity he seems to be doing just fine.

I just did the math and Tyler has made so much progress that he has now reduced his oxygen intake more than you or I would going from sea-level to the top of Mt Everest (without supplemental Oxygen). He started at 42%, he is now at 25%

And so how is Tyler you ask

and So it sounds an awful lot like we are being jerked around with this surgery thing. We are not. We basing going to surgery on symptoms we are attributing to the increased pressure in Tyler's head. No one is going "Hmmmm we haven't done a shunt in a while let's choose Tyler." There is also a lot of information that has canceled each trip to the OR. By some miracle Tyler shows us his cards right before each scheduled surgery and gives us the information needed to postpone the surgeries. He is not a clear cut case for a shunt and he may not be for a long while. Our biggest problem with just sending him in is the only symptoms he displays are apnea/bradys. He eats very well, his neuro checks are very appropriate, and he does have some good alert time. We know his ventricles are too big and they need to be drained. Whether time will finish doing it or if we have to intervene remains to be seen. So in the mean time Tyler has great days and some not as good days.

We never mentioned how Tyler was looking or acting yesterday or Monday. He looks great. He is plumping up and starting to look like a normal baby. There is tone starting to develop on his arms and legs. Less flappy skin. He is starting to have a nice full round fat belly and his skin looks thick and not papery anymore. When he isn't overstimulated from pokes, exams, everyone talking loudly and stressed over him, he is very responsive when he is awake. Monday night and last night after he had been left alone for a couple of hours he woke up nicely and was alert for quite some time. He looks at us and smiles and acts how I'd expect him too. The parents are definitely worst for ware when it comes to surgery talk.

Woosh....

That was the sound of another surgery appointment flying by without actually having surgery.

Sharron and I came back from lunch to a completely new plan. The Neurology and Neonatology teams had re-grouped and re-examined the last head ultrasound with the help of a Pediatric Radiologist this time. They came to an entirely new conclusion. Not only does Tyler not have a new bleed in his head (it was most likely a funny looking clot formation), but his ventricles are actually getting smaller! This makes alot of sense considering the recent reduction in head-size.

We were expecting to come back to a pretty difficulty snap decision. Surgery or no, if yes we need to take him down to the OR now. That decision was going to be more complex because we had a room full of experts each with their own opinion. We respect the lot of them but someone has to make the call. Thankfully the Neurosurgeon and Attending Neonatologist ended up on the same page.

This was a really agonizing one for us. First and foremost It's doesn't feel natural to "want" your kid to go into surgery even when you know it is indicated and should help. Add to that conflicting information (bad ultrasound read,un-expected change) and you have no idea what you want to happen, let alone think should happen. Thankfully in the end it was not a hard call to make. Faced with so many unknowns and our experts admittedly working from opinion. A shunt is a permanent thing, once it's in it stays until it fails and needs to be replaced. It is possible to out-grow the need for a shunt, but the current research indicates that it just causes more damage to go in and remove it.

The current plan is to watch closely and monitor until Monday and do another MRI. As long as he stays symptom free and his ventricles continue to get smaller or stay stable, we can wait and see.

I'm so Confused!

After hearing reports on Sunday of Tyler's A's and B's clustering and taking a lot of stimulation for him to come back, I thought he would be definitely going to surgery today for a shunt. Yesterday when we got here, we started to hear there was a second bleed in his left ventricle. So we started to think maybe we've waiting too long and the pressure with Sunday's episodes caused another bleed. Ok go to surgery and release that pressure. We also noticed his head circumference was down 1/2 cm from Sunday to Monday. We attribute that to measurement error. Getting a head measurement on a squrimming baby is more of an art than science.

Today after a sleepless night of wondering if we waited too long, we were greeted with his head has SHRUNK another 1/2 cm. His nurse checked it like 12 times, the nurse practitioner measured another dozen times, and the pediatric surgeon came up and also measured. His head has shrunk a full cm since Sunday. Ummm hold the phone.

We had yesterday's ultrasound reread today by the pediatric radiologist. They don't see a new bleed. They also said the ventricles look smaller!?!?! Now what do we do? How do we explain Sunday?

The attending Dr is of the opinion we wait some more. If the ventricles are starting to decrease let's see where this leads us. Shrinking ventricles doesn't mean the shunt is completely off the table. The dissolving clots can re-clogged the area again and cause the ventricles to swell. Installing the shunt to soon may rob the body a chance to remedy this problem on it's own. There is a definite balancing act here.

First bump, 7:15 AM

Sharron called in for out morning updated as we were getting showered and dressed this morning and heard an interesting tid-bit... Tyler's head is down in circumference .5 cm. The attending physicians couldn't believe it so they had to come over and measure it for themselves. Not sure what this means yet.

We're off to catch rounds. more update soon.
Ben