*there's snow!

About 6 inches!

Chris looking out of Will's window at the hospital family garden as it started to snow Friday:

 

  

We were trying to take pictures from our moving car. We finally got stopped at a red light next to the Union Station hotel.

 

  

  

Katie in our back yard Saturday:

  

After a lot of discussion about who might get snowed in where and for how long, Chris and I decided to stay home together with Katie Friday night. Today we were able to drive to the hospital to visit Will.

Because of the staff schedule, every two weeks Will has a different attending doctor and every month a different fellow. The fellow is a doctor that is already a pediatrician but is completing a fellowship to become a neonatologist. The rest of the team includes a handful of medical students. [Correction: I learned after posting this that the rest of the team is all doctors who are completing residencies in the pediatric speciality. Since Vanderbilt is a teaching hospital I have assumed that everyone around me was a student! That, and the fact that most of them are standing around looking bored during rounds.] Our fellow for January is the same doctor in the room when Will was born (so I'm told) and was on his team the whole month of November. She was the doctor that talked us through all of his health concerns in the beginning and the one that broke the news to us that Will had TOF. We really like her. Since tomorrow begins a new month the whole team will be new to us so I'm staying the night to ensure that I can be there for rounds to meet the new team. 

Chris rocking Will under the (ceiling tile) stars:

 

*there's some eating troubles

It has been an exhausting week for everyone. I spent the first 2 days after Will's move to the new room at the hospital. I was hoping to help feed him around the clock. He was suddenly not eating as well as he had been and we weren't sure why. For the first few days he was cared for by nursing staff who have very different approaches. I was hoping to serve as quality control.

In addition to the eating troubles, Will also began having more severe spells again.We spent the week talking to his doctors, who were stumped yet again.  [last time: breathing, this time: eating]  I am summarizing quite a bit. It was an eventful week and it would be hard to relive it all here. After some tests and a lot of guessing, Will is now being treated for reflux with an acid reducer. I no longer need to help feed him because he is also receiving all of his feedings through the tube to give his esophagus time to heal. This is the first and hopefully only treatment he will need. If the medicine doesn't work the next step is surgery and a feeding tube in his abdomen. Everyone please pray that this works and Will will begin to eat normally again. We thought we were going to bring Will home really soon. The surgery and tube would help him come home sooner because it would ensure that he gets proper nutrition at home. We decided we would rather wait a little longer and avoid surgery if possible. That was a really difficult decision!

Luckily, over the course of the week one of Will's primary nurses was on the schedule again. We are so thankful for her!! She has known Will for several weeks now and has been a Vanderbilt NICU nurse for 32 years. The current attending doctor called her wonderful and at least one other nurse has told us that she knows everything. I am flattered that she wanted to sign up to be one of Will's primary nurses. She has been instrumental in helping us avoid the surgery and feeding tube so far. This post could definitely be a report of those things happening if it weren't for us protesting as well as this nurse's knowledge. If those procedures become more of a possibility I will describe them here, but we are really, really, REALLY hoping for success with medication alone.

This week we met a different cardiologist with the group at Children's Hospital. She will be the one that we see most often for outpatient appointments. She has been following Will at the hospital and is pleased with how he is doing. Will gets periodic echos and although there is an obstruction that has gotten smaller, it doesn't need urgent attention. For now, we expect his OHS to be in May.

Things that are going well for Will:
1) he passed his final hospital eye exam! And
2) the physical therapist says his muscle tone, strength, and range of motion are very good!

Will has been developing a new hobby: pulling out his feeding tube. One day this became such a problem we gloved him with his little socks. Twice I found that he had worked the sock off the very hand that he uses to pull the tube.

  

 

*there's a new room!

Daddy successfully getting him to eat a whole bottle. Right now, a whole bottle for Will is the equivalent of "3 tablespoons and a smidge" according to our nurse.

 

He is still doing those funny poses with his hands. This one is not a frozen view of him in motion, it is the exact position of his hands for several minutes. Same goes for the photo above.

I've read that the raised hands and splayed fingers are signals of stress for a baby. But he does them so often (And to the side. A little like the Hula.) I have come to believe that it is his special quirk.

 
  All wrapped up after his bottle.

 

  Enough pictures!

 

Today Will moved to the intermediate unit!!! It's his last stop on the way out of the NICU! The babies in this unit need less attention and share a nurse with two other babies rather than one. I think one of our primary nurses asked for us to move there sooner than later because she could tell we are reaching the limits of our patience with his stay. As we followed his crib down the hallway we passed one of the nurses who worked with Will his first week in the hospital. She smiled and asked where we were going but knew the answer already by seeing our arms full of Will's things and smiles on our faces. I remembered later that she is the only NICU nurse that has seen me cry. A nice full-circle moment.

We predict he will still be there for another week. Maybe two. But this room is a bit of a reward for our wait. It is designed for parents to room-in with a bed and private bath. There is a fridge and T.V. with DVD player. Major conveniences in this inconvenient situation. I have spent a lot of time riding the elevator getting myself something to drink. Not anymore! We can also eat in the room now and have more visitors. We don't even have to wear a gown when we hold him. We might, however, have you put one on if you come to visit. Especially if you have been around children that day and haven't changed your clothes. It's RSV season and Will hasn't yet been vaccinated. Thanks for understanding!

The new giant room!

 

 

  Sometimes we share an elevator with one of these, a children's hospital version of wheelchairs.

 

Chris & I are still working on the bottle feeding. We hope that when his feeding tube comes out his spells will decrease. Describing the theory would take awhile, but it has to do with: possible reflux, a vagal response, and the esophageal sphincter. Enough said, don't you think?

*there's an 81 day old baby

And this 81 day old baby is expected to stop having spells and eat from a bottle. This week has had several ups and downs with both of those. For one whole day he refused to eat from a bottle. No one ever figured out why. But now he's back to taking at least half of what he gets per day by bottle. Unfortunately the frequency of spells has increased again. Not so much that he needs oxygen, but too many for a baby that is ready to go to the intermediate/step down unit. The other event of the week was that Will's weight gain would go up a few ounces and stagnate for a couple of days, go up a few more ounces and stay there a few more days. Finally he is up to 5 lbs, 14 oz! This is still an improvement from the days where he would gain an ounce and then lose two.

Chris and I are trying to focus on helping him bottle feed this week. He seems to eat more for us and we also are learning how to spot a spell coming. It's not difficult now that we are getting used to them. He turns a "dusky" color and goes limp. I don't care for the word dusky but it is truly the best way to describe his face at that time. So we stimulate him by changing the position in which he is sitting or lying and patting him on the back. 

Other than that, Will does act like an older baby now. He has a lot more awake time. He lies quietly entertaining himself. He cries when he's hungry. He doesn't, however, burp. He used to be a great burper but today I couldn't get him to burp a single time. Nurses were unsuccessful either. They can even take the contents of his stomach out through his tube to see if there is air in his tummy and that only worked once. Sometimes he is such a mystery.

My goal this weekend is to take more videos and get more pictures of him doing cute things with his eyes open.

 He loves to hold hands.

  Almost caught a picture of a smile.

*there's a due date

January 18th! Today was (or is) Will's estimated due date. To say the least, the past 11 weeks have been vastly different than we expected in several ways. Here's few of them:
*I didn't know I would start collecting parking garage cards. I usually get to the hospital during business hours so I have to take a card to get in, but when I leave there is no attendant so the cards stay in my car, my pockets, my purse, etc... They are everywhere!
*I didn't know that I would spend so much time looking at pictures of the human heart. And actually learning how it works. :) 
*I didn't know that I would be using the services of the very hospital for which I've participated in fund raising.
*I didn't know that conversations between Chris & I would include the words "I want him to come home" so many times. Or that we would laugh so many times over stories about the staff and other families we are around every day. There's the doctors whose personalities are just asking for Chris to do impressions. There's the lovely woman at the front desk who doesn't want to be at work. And there's the father who knows everyone and everything about the whole hospital. Not just our floor, the whole hospital. Chris calls him the Mayor.


As for Will, things aren't quite as expected for him either. I've been thinking that we will either be unaffected by his future scrapes and bruises and broken bones because they are so minimal in comparison to what we've seen him handle. Or we'll be more upset because Hasn't He Been Through Enough Already?

This weekend I was there when Will was getting another bath. This nurse uses a swaddling method of bathing. One body part is taken out to be washed at a time, while we continuously rewarmed the blankets by pouring on more water. A LOT of blankets got wet, but Will seemed to love it.

Here is a picture of him with no feeding tube, but this was a brief break before getting a new one. He has a mustache left by the gummy part of the tape:

I'm sleepy.

After mustache removal.

 

~Jody

*there's no more nasal cannula

No more oxygen!

Will took 2 of his feedings today entirely by bottle. As that number increases the next thing to go will be his feeding tube.

Hopefully you will soon see a picture with nothing on his face but those cute little cheeks!

*there's growth

Here are some diaper size comparisons for you.

from left to right:

a size 1, a newborn (Will's current size), a blackberry, and Will's 1st

The newborn diaper is from the hospital and says "P-S" on it, but in my opinion, it is the same size as a newborn diaper. He's actually growing out of things! Below is Will in a precious preemie size sleeper from my cousin Chris in Florida. In some brands, Will has already outgrown the preemie size!

You can see how a sleeper is handy for him right now since there are spaces between snaps that allow room for wires.

 

Will is having a great week! His ability to eat from a bottle gets a little better every day. His weight gain isn't quite a fast as the doctors would like, but he will still be fed through the tube as long as he needs the help. I got a lesson from a physical therapist today. They visit him once a week as does the occupational therapist. Now we can continue the massages and exercises every day which will be fun I think. We only did the lower body things today since he was sleeping. I guess it wasn't too strenuous since he didn't even wake up!  And lastly, Will had a great eye exam today. No evidence of retinopathy. If he is still in the hospital in 2 weeks they will come to recheck his retinas. If not, he will eventually have an outpatient appointment for that as well as hearing and general preemie follow up.

For now we only have guesses about when Will is coming home. One week...two weeks maybe? As of today Will has been in the NICU for 73 days!

Featured pic of the day:

The most organized place in our house! One of Will's armories. Chris has not enjoyed the armories over the years. He has had to lift them each time they have been moved and they are awkward to carry. I think he feels all the moving was worth it now that he sees how perfect they are for Will's things. (Don't remind him that one of the legs once knocked a hole in a wall as we were moving it up a staircase.) Thanks to Uncle Tim & Aunt Charlotte for passing them down to us!

~Jody

*there's a bath

Will's day.

 

 

 

 

 

 

 

 

  The End.

*there's 5 pounds!

That's right! Officially 5 pounds as of today!

 

The shadows on his face in the photo above are from a mobile that is now on his crib.

 

Will also had a good day of eating. The nurse on the night shift said she fed him, tried to put him back in bed and he cried for more! Something about him crying to be fed (and Hello! He has a mobile!) makes it seem like he is just like every other baby.

Recent firsts: Will had his first ride in a bouncy seat today. The nurse said he was fussy this morning but with the help of the seat he slept for a couple of hours.

Dear Will, when you come home we have a bouncy seat as well as a beautiful swing waiting for you! Don't let these things tempt you to stay at the hospital.
Love, your parents

Almost recent first: Today was the first time since Will was born that we have had snow. His daddy was so disappointed in the tiny amount that fell I think we are going to declare that this time doesn't count as the first official snow. Tennessee's repeated promises of snow with minimal results are a constant source of wintertime frustration for Chris. Maybe we can turn this into a positive thing - a reason for trips to the Poconos. :)

~Jody

*there's embarrassing books

Will is doing really well lately! He is getting oxygen through the nasal cannula but is off the Vapotherm. Also, he has graduated from trying to bottle feed a few CCs once a day to two sessions per day. Also, he can now take as much milk as he wants during bottle time, as long as it takes less than 30 minutes. After that long a preemie will exert too much energy and will begin to lose calories.

I haven't been able to visit because I had a gum graft (fun!fun!) Monday. I'm anxious to visit tomorrow to see how he is progressing. Yesterday seemed like as good a time as any to schedule a gum surgery, but in hindsight maybe there is never a good time for gum surgery. We are able to do more and more with Will as time goes on. I think (and hope) our responsibilities while at the hospital will increase with a lot of speed as he gets closer to coming home. Since I don't know what to expect I'm going to try to be there as much as possible to get prepared. At least we know my teeth won't fall out now. :)

A visit with my mother Cheryl.

I think she's letting Will choose her grandmotherly name.

Since he hasn't gotten around to that yet I'll call her Cheryl.

Finally! I have pulled out and emptied a box of children's books I've been collecting since who knows when.

Actually I do know how long I've been doing this

- since I was a child!

Here are some of my favorites.

As you can see I've added some newer favorites over the years.

Where the Wild Things Are was Chris' favorite so I made sure we had a copy for our future kids.

The embarrassing thing about emptying this box is the discovery of how many books I have bought for children as gifts, written: their name, my name, the occasion and year inside and NEVER got the book to the child. Someday I will have to explain to Will the importance of following through. I think he will easily understand the concept with all of these real life examples on his bookshelf. This will be a crucial lesson for him since he already knows how to procrastinate...see above about how he still hasn't picked a name for his grandmother. ;)

Will napping while sporting a little hat.

More pictures and Will updates soon!

~Jody