Look Mom, No Canula

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

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

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

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.