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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