*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. :)

*there's a sweet boy

that weighs 2lbs, 11 oz!

Get this - his nurse said today that when Will gets his "care" done (diaper change, temperature taken, etc) he likes for them to hold his hand! I'm not even sure how that works. When we change his diaper we're just trying not to disturb any of their medical apparatus.

The nurse also told Chris repeatedly that Will is so sweet and followed up with "and I'm not just saying that". The staff often call him handsome or something similar but since she had a specific story to go with her comment it seemed more sincere this time. Of course we believe he's handsome and sweet! But it's nice when someone thinks the same and takes the time to tell us.

Here is the original woobie picture taken with my phone the other day. The other ones were taken after he had been turned over.

Such a sweetie.

*there's a waiting sister dog

This is Katie, who I've raised for 9 years now. Chris started helping the year she turned one. She's starting to show her age with that white muzzle, isn't she? Katie has a lot of famous adorable poses that have never been caught on camera because she doesn't like getting her picture taken...




This is why you won't see a picture of her in a Christmas card from us!

Will is still doing well. On the ventilator he is able to sort of recreate some womb time. So he rests and gets pampered and that is pretty boring to read about. I don't include a lot of medical information here for several reasons. One reason is that when we are told something that sounds concerning it is usually ruled out by the next day. The main reason is just because there isn't anything new happening. I can tell you that his heart murmur will still be checked on at times but he isn't being treated for anything that isn't normal for babies like him.

There is a plan to try taking him off the ventilator on Monday. That is also the day I will go back to work until he can come home. The good news about going to work is that I'll be very close to the hospital so I can get a lunchtime and after work visit in. The downside is that I'm already tired so it will be hard to get up and get there - at least the first day. Chris has a visiting routine already and it will help for me to have one too.

I learned today that when it's close to time for Will to go home, he'll be moved from where he is now and we'll get to room in with him at least one night. Right now he's in a big room with 9 other isolettes. I'm sure I'll say this over & over...but the staff at the hospital is always so helpful and it's nice to know that he (and we) are in good hands.

~Jody

*there's a woobie!

Just when I think there won't be anything to talk about....
we visited Will today and found him getting kissed by a woobie!

When Will is covered up, it is usually with a small square of fabric also know as a security blanket. As you look closely at this picture, you should be able to see one of the two corners that are knotted to make little hands. Another corner has a round head with a little pointed hat attached. Will looked so cozy under this blanket today as he was being "kissed" on the ear by the face of this little blanket person.

Chris & I have names for most of the blankets at our house but none are called Woobie. You'll have to tell us what you call/called your security blankets in the comments.

~Jody

*there's a trip to the hospital

Here is a bit of what the trip from our house to the hospital looks like.
Above is the downtown skyline.
Below are a few more sights along the way.

As for Baby Will, he is still hanging in there. The excitement of having a new member of the family has worn off a little and now we just feel like we make a lot of trips to the hospital! It is definitely worth it but doesn't feel very normal. We wish we could take care of him at home. And we're pretty sure he wishes he was home too!

It turns out he will stay on the ventilator for a little while longer. We won't be getting him out of the incubator to hold until that's done but we're really looking forward to doing so.

I've been hesitant to share Will's newest weight in case for some reason he were to lose the weight again. However, it has been consistent for the past couple of days so we're happy whether it changes or not. 2 lbs, 8 oz! His long, skinny fingers are looking a little more plump now.

How much Will weighs isn't really the most important thing about his health right now. But since there is a lot of waiting involved it has been nice for Chris & I to follow. The hospital staff continue to increase the amount he is fed and so far he is tolerating the feedings well.

The Will picture of the day is featuring his sideburns. See above. They seem a little long for such a tiny boy! He has lost a little hair on top and sometimes I would swear it's turning blonde...that's probably not true but as you can see I am endlessly entertained by his hair.

~Jody

*there's two grateful parents

There's not much to report about Baby Will today. In his case, a boring day is a good day! We expect him to be off the ventilator by tomorrow.

Here are some pictures from the past 2 weeks for your viewing enjoyment:

Chris & I would like to use today's post to thank everyone for the calls, emails, visits, and blog comments we've received. We had no idea we had so much support until we needed it! I've lost count of how many people have said "Let me know what I can do". We have such wonderful coworkers, friends, and family and we don't take for granted that having you all will help us be better parents. Will is a lucky boy!

I'm grateful too for the comments about how this site is appreciated. I wasn't sure I should do it but now I can't imagine not continuing to keep everyone informed this way. And as you can see, even if there isn't much going on there will probably always be pictures to share.

*there's a little progress!

Will's 2nd week of life has been eventful!
After doing such a great job starting out breathing on his own, it seems he got tired. He began having apnea spells more often and had trouble coming out of the spells without a lot of help. The doctors decided that he needed to be on a ventilator. At first, this was scary news to a worried mommy but after seeing him resting so comfortably, it was clear that it was the best thing for him.

They expected him to be on the ventilator for 5-7 days. It was on a very low setting and only gave him a little help. He was breathing on his own, but if he stopped the ventilator would be waiting to help him. He's had the vent for a couple of days now as well as antibiotics. Since then he has only had ONE apnea spell! Today we were told that they have decided to take him off the vent early.
We are so happy for him to have done so well.

In the next couple of days, we should both should be able to do something called Kanagroo Care with Will. More on that to come...

Overall, we are considering Will's week 2 in the NICU to be his week to rest up from all the work he's been doing and hopefully allow him to put on some weight. We're proud to announce that Will now weighs 2 lbs 5 oz!!!! We LOVE news like that. Every ounce helps us feel like he is closer & closer to coming home! He's now getting 1 and a half CC's of breast milk every 3 hours. Maybe this increase will help him fatten up a little!

Below are pictures of Jody feeding him for the first time today!

To follow up on things mentioned previously, the ventricle that was causing his heart murmur is closing up and should no longer be a problem! All X rays and exams of his head, heart, abdomen, etc have been fine. They also don't expect his jaundice to return anymore. We really do have peace of mind that he's doing well.

More to come on Will's blog so stop by every few days for the latest news.


*****COMMENTS*****
If you've tried to leave a comment, please try again.
It hasn't been working but should be fine now.If you don't see your comment in a couple of days email Jody to let her know.

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RECENT FIRSTS:
Yesterday Will had his first case of bedhead. It was cute!

*there's a new daddy!

First time changing the diaper of his son!

This is not your average sized diaper...

or your average sized bottom...

there were a lot of wires and tubes to manage...

Also, he got to take Will's temperature...

which was fine by the way!

But the most important thing that happened that day was that we saw
his hair free of masks or the Aquafor
they cover him with for the jaundice lights....

Look at this sandy brown hair!!!

Other than that excitement, we have good news about his weight. After being born at 2 lbs, he lost a little and has slowly regained. We have tried not to pay that much attention to his weight and worry unnecessarily, but it sure is good news when he gains! As of last night he now weighs a whopping 2 lbs and 1 oz! A tiny, tiny improvement but we'll take what we can get.

Unfortunately, he is having more trouble with apnea spells. The nurses say this is when preemies forget to breathe. He did start to get oxygen through his cannula yesterday instead of just room air. Now they are doing some tests to see if he needs a cpap machine. We obviously don't like when he has more machinery attached to him, but are trying not to worry too much about this. The truth is that other 29 week preemies often have had a that kind of help all along. So Will needing some extra help is to be expected and it just makes him a normal preemie.

He is also getting an echo cardiogram (sp?) today to check on his heart murmur. I hesitate to describe what is going on with that because I may not have all the medical terms correct, but there is a ventricle that is needed while the baby is in the womb, but not needed when they are born. For a preemie this tends to close slower than normal and sometimes needs medication to help it along. They are going to look today with the echo to see if it's closing with the help of some medication.

Other than that, he's still getting 1cc of breast milk every 3 hrs which makes us proud. It unfortunately means there is a tube down his throat and tape on his face to keep it in place but we know one day those things will be gone & we can see that pretty face all the time!

Thanks so much to everyone for thinking about him, praying for us, and asking how we're doing. More pictures to come!