*there's Dr. Scott

Will's hospital and the cardiologist we spoke to this week is featured in a children's book called Nathan's Special Heart. Go here to read a story about a patient and click on the link to the book. You can read the book online.

The illustrations are excellent and show several spots around the hospital that are familiar if you've been there. I can see why a child would enjoy seeing them again in a book after being a patient. Towards the end of the book you'll see Dr. Scott. He says if we want he will be the cardiologist Will sees long term for outpatient check ups. He also explained that the cardiology team meets weekly to discuss cases. Since they all weigh in on the plan of action we get 14 other opinions. I especially like that he gets that without the hassle of leaving the hospital.

Killian, the child featured in the link above, has TOF like Will but his case is much more complicated.

Will is doing well. His recent bloodwork was "as perfect as perfect can be" and he got physical therapy for the first time today. A rare low key day!

~Jody

*there's a huge tiny diaper

This picture is from yesterday.
I finally got a shot of how high Will's diaper comes up in the back.

If pants that are too short are called "high waters", there should be a name for a diaper that comes up to the shoulder blades. Well, I guess there is already a name: "too big".

The cushioned thing he lies in with hearts on it is called a Snuggle Up. When you get to be a big boy like Will you move up to a bigger size Snuggle Up. The straps across him are to help him feel more secure. If he were still in the womb he would be surrounded on all sides. Those straps and the tall edge at his feet give him something to push against so it feels like home.

Now for today's picture:

He's back on the cpap!

We also thought his hand is awfully cute clinging to the Snuggle Up strap.
Maybe he's thinking "Come on! We need this cpap to work baby!"

Today an ENT was supposed to examine Will for suspected Vocal Cord Paralysis. But before they got to it it was decided that he had been doing so well for so long it was unnecessary. He is doing well on the cpap so far and we hope he can step down to the nasal cannula again soon.

We also got to talk to a cardiologist this evening. He explained more about Tetralogy of Fallot (TOF) and what the repair will involve. He is hopeful that Will will only need one open heart surgery as an infant. He does, however, expect him to need another surgery in adolescence or early adulthood. By then they will hopefully have perfected something less invasive than open heart surgery for the remaining repairs. He really put our mind at ease about the success of the surgery and how active we can expect Will to be.

The best news was that his is considered to be less severe than many cases. I've learned that TOF can be diagnosed before birth. I had several ultrasounds since there were concerns about Will's growth and was frustrated that this wasn't noticed sooner. Learning that it was difficult if not impossible to see since it isn't a severe case is reassuring. When I have more time, I plan to try to share some of the information we have on TOF. In the meantime we were told about this site with a video that shows the condition in detail. The cardiologist said that someone on the staff was an artist before their career in medicine so they can make really helpful pictures to demonstrate the differences in the way Will's heart works.

~Jody

*there's a holiday party?

Here is a sign on the NICU door at the hospital tonight. I had to stare at it for a minute to let it sink in. Yes, there is a party with "congenital heart defect" in the title. But more importantly - I realize this applies to us! My imagination has been full of things that might happen at an event like this. Sculpting hearts out of clay? Trivia questions? And how do the holidays play into this theme? Let's hope there won't be any games where we have to identify the parts of a heart or how it works. Chris and I intend to learn about Will's heart but right now we would need cheat sheets. We'll let you know how this evening of excitement goes. ;)

Tomorrow we plan to be at the hospital for rounds to hear from the team of doctors. The nurses will answer our questions any time but being able to listen in on the decision making is interesting and reassuring.

The featured pic for today is of Will's precious little feet.
How did he get them contorted like this?

~Jody

*there's a cheery hospital!

Here are some sights from around the hospital this week.

As for Will, he has had an eventful week. It's hard to even remember what to tell you. Some medications were tried to see if they could help his spells. They didn't work much at first. So in the meantime an Ear, Nose, & Throat doctor did a bronchoscopy to see if there was anything wrong with his airway. The good news is that it looked great, the bad news is that we still didn't know what the trouble has been.

Over the course of Wednesday night, Thursday (the day of the ENT procedure), Thursday night and today Will's spells have all but disappeared. There isn't an exclamation point there because it may be too soon to celebrate. We are very happy about this but no one is sure that he will continue to improve or even stay the same. It could be a honeymoon period for one of the medications for example.

Due to the ENT procedure Will had to stop receiving feedings for awhile (just like an adult before a surgery because of the anesthesia for the bronchoscopy). They put him back on the TPN IV and this afternoon they resumed giving him breast milk through the tube in his mouth. Only 2 CCs every 3 hours! He had been getting about 26 CCs before but now they will start over and gradually increase the amounts. For this reason we haven't focused much on his weight gain this week.

Our nurse said that it's possible they will try to take out the ventilator again sometime this weekend or Monday. I just realized I've been referring to his spells as him "not breathing well" but that probably isn't the best description. The spells and their levels of severity have been explained to us repeatedly. The problem is that I only take in pieces of information each time. Luckily all the nurses encourage us to keep asking questions so we won't be in the dark. There is so much I don't understand that I have just chosen to only follow a few key things at a time. That is why Chris is the only one that knows how to read that screen with Will's heart rate numbers & such. I'm guessing that our hospital stay will be so long that I will eventually figure that out too.

I will attempt more explaining about Will's heart and what the surgery will involve in the near future. For now I just wanted to give this quick overview since people have been asking me about Will's week. Most of it wasn't very fun for us but as of today we are much more encouraged. We really enjoyed visiting with him after work today.

Quick side note - after so many days of Will seeming really fragile, we haven't interacted with him very much. Tonight the nurse encouraged me to change his diaper since he is stable. I have changed many diapers in my life. But something about this situation has made all of that experience irrelevant. I have to be talked through a diaper change as though I'm performing a life saving surgery for the first time next to a ticking bomb. Luckily each nurse does not realize how many times I've been helped with this so they are gentle with me. In my defense, there is a limited amount of room to move your arms and it is just plain hard to reach him. Also, I don't want to touch or move (or frankly even look at) that ventilator breathing tube! Tonight the nurse showed me how to turn him from his side to his back. He basically grabbed him like a 3 lb sack of potatoes and plopped him back down! Of course the breathing tube didn't choke him or cause the end of the world. Will is such a tough kid and has tolerated a lot of things. Maybe I will eventually figure out that he can live through a diaper change with me. :)

~Jody

*there's a three pounder

Will weighs 3 pounds now!

This is an old picture but a favorite of mine. He was sleeping with his hand on his face like that.

*there's two steps forward and one step back

Well, not exactly two steps...but Will is back on the ventilator today. The attending doctor has a few ideas about what might be the problem. He and the other doctors have been stumped trying to figure out why this poor boy just cannot breathe well on his own. The heart problem is one thing but his blood work looks like a baby that would be able to breathe without being intubated. He's such a mystery.

Wrapped up like a present on Sunday with our friend the cpap:

He does the funniest things with his hands:

It's always disappointing when it seems like he isn't making progress, but enough about that for now. Here are some pictures from Saturday. We did get to hold him! We were very happy to do so but it wasn't quite as exciting as I imagined. This just can't be the same has having your baby at home where you can pick him up whenever and however you want. Having a baby that lives at the hospital is just not normal! I may not even use the word normal any more after this experience.

Getting rocked by Daddy:

Mommy's turn:

We must have done a good job because he slept the whole time:

~Jody

*there's a cpap

The ventilator is gone! Actually it's still in the room in case it's needed - see the black screen on the far left of the picture above. Today Will stepped down to a cpap machine. You can see it at the end of his bed. It looks like a white box on a pole with blue tubes.

The doctors think the spells he has when he doesn't breathe well now are related to his heart. They call them Tet spells rather than apnea since they are likely to be caused by the Tetralogy of Fallot. There are risks and benefits of both the vent and the cpap, but the cpap is just not as invasive and means he doesn't need as much help. They say the babies often don't like it but Will hasn't seemed uncomfortable so far. He does, however, look like a rhinoceros.

This is what the head gear looks like from the back.

At one point he was lying on his stomach and tried to turn so he was face down in the bed. Things like this have earned him the description of "feisty" from the nurses. You would never know it looking at him so peaceful in this picture:

The other positive news from today is that the supplements Will was getting through in IV have been discontinued. The bag of yellow liquid (hanging on the left - see photo below) is his last bag of TPN (Total Parenteral Nutrition). Now he will only get milk through a tube in his mouth. As of today this was increased to 23 cc's every 3 hours.

Chris is really vigilant at watching his monitor and he knows what the numbers should be and what all the lights and beeps mean.

A little weight gain!

Will's new name sign for his door:

Although he was just suspended in the air over his bed again, Chris wants to report that he got to hold Will today! We still save all the touching and interaction with him for certain times of the day. The rest of the time he sleeps. The nurse said that when he does well - not having a lot of difficulty breathing or struggling with the cpap - then she will get him out for us to hold soon.

~ Jody & Chris

*happy thanksgiving!

The Dianna family has had a great Thanksgiving day. Will's new NICU room has made all the difference in visiting him. Children's Hospital is so inviting and cheery and we are starting to see more & more familiar doctor, nurse, and parent faces every time we go. I will have some pictures of the holiday decorations there soon.

Here is his new room. This door will soon be decorated with his name. We'll have to find a little Christmas tree for his 1st Christmas too.

This giant machine with the screen in front of the isolette is the ventilator. It will be really nice when we don't have to see it anymore.

Today Will's nurse took pity on me and helped me hold him as well as possible without taking him all the way out of bed. I've done this before for other reasons; changing his blankets for example. It's basically the same position he usually lies in but lifted a few inches in the air. This time she raised the top of his isolette so there was nothing in between us and helped with the wires for the sole reason of me holding him. It was nice to get a sense of how he moves and how much he weighs. Since his head was not turned to the side the shape of his face was even different. His eyes were open the whole time. It was nice to get that time to connect with him.

Back to sleep.

This is the blanket we have covering his isolette to keep it dark -
a thoughtful gift from our neighbors.

Thanks to everyone for the great meal today! We wish we could have seen all our family near and far, especially the Diannas in Pennsylvania. We look forward to being able to bring Will to celebrate holidays in the future.

Here is Katie back at home wagging her tail to say
Happy Thanksgiving!

~Jody

*tetralogy of fallot

Baby Will was moved to a different NICU yesterday. Not because he is sicker, but because he needs to be closer to the cardiologists. He has a heart defect called Tetralogy of Fallot (fuh-LOE). We're still learning what it is, but we know that it means he will have surgery when he's around 4-6 months old and he will see a cardiologist for the rest of his life. It can be related to other problems but we won't be concerned about that until needed.

The other things we have learned so far are positive. Children tend to do well after the surgery. For example, one of the neonatology interns at the NICU was born with the same condition. Although Will has other problems due to being born prematurely, this would've been there anyway. So far he doesn't need any special treatment for it and we are trying to patiently wait as the doctors get to know him better. Over time they can tell us more about what to expect.

The most pressing thing right now is his inability to breathe on his own. That still helps determine when he can come home, but more importantly....when we can hold him! There is some debate about whether the heart problem is related to his trouble breathing. As you can see, every day brings some new information so we will share when we know more.

The good news is that we like being at the new NICU. He has a private room that is more convenient for us in several ways. There is more room so we aren't in any one's way and we always have a comfortable place to sit. We also don't have to leave when the nurses change shifts or when the doctors do rounds on other babies. We'll take some pictures tonight to show you.

In the meantime, if you want to know more about his heart you can do so here. We have been given some good information on paper but this description is pretty good also.

Mr. Woobie is back....sprawled on his back with his head next to Will's head.

Here is Will's bedding that came in the mail today:

*there's a tough kid

Will has had a busy couple of days. He was taken off the ventilator yesterday at noon and we had some great visits. He's much easier to enjoy without that breathing tube in the way. He held my fingertip for half an hour while he took a nap. I'm sorry to say that by 9 p.m. he had the breathing tube back in again. We are told that there are a few possible reasons why its so hard for him to breathe on his own right now. They are doing some tests and we'll probably know something by tomorrow. We hope it isn't something serious and can be easily fixed.

As always, there are some positive things going on too. The ventilator is set to the mode where he does all the work and it only helps when he needs help. His weight gain is not quite what they expect but he's still gaining. 2 lbs 12 oz now! Also, he is wrapped up in a blanket today burrito-style and looks very comfortable. The doctors hope that having the breathing tube to help him for about another week will give him time to grow and help his brain mature. After all these things happening to his tiny body, we can't help but think Will is going to be tough by the time this is over.

We hope to get his room repainted this weekend. Right now it still doesn't look like we are ready for him to come home!

RECENT FIRSTS

I saw Will's first act of fiestyness with his nasal cannula yesterday. There are pictures of him with it in previous posts (see the first few pictures on Nov. 13th). Yesterday he didn't like having that in his nose at all. Usually he has these aimless, random arm and hand motions. But he would suddenly grab that little tube and pull it down quickly with the clear intention of getting it out of his nose. I didn't know he could be goal oriented so soon. :)