*there's a mess

Why is it that the more we do to get ready for Will,
the further away from ready we become?
don't answer that

The many faces of Will on a Wednesday:

The boo-boos on his nose are from the beautiful fingernails we were admiring yesterday.

~Jody

*there's an 8 weeker

His pinkie fingernail on mine

When Will was first born he was often referred to as a "29 weeker" by hospital staff. They still use his supposed gestational age as a guide and right now he is at 37 weeks. But by our count, Will turned 8 weeks old yesterday! He weighs 4 lbs, 8 oz.

The biggest thing going on right now is that Will is being weaned off the Vapotherm machine. I looked for a simple link to describe what it does but didn't have much luck. Vapotherm is a step down from the Cpap and the step after Vapotherm is just getting oxygen from the hospital room wall through the nasal cannula. For you medical people, he is currently at 2 liters and 21% oxygen, but that percentage gets turned up as needed to help with spells. For the rest of us, the liters are the amount of flow which can go down to one. 21% oxygen is the same as room air that we breathe so we want that to stay the same.

The Vapotherm, just like the ventilator, is necessary but can cause damage at the same time. In brief, exposure to too much oxygen before they are ready can cause their retinas to detach. Yesterday Will had an eye exam that looked okay but they plan to follow up in 2 weeks. I asked if that means they are concerned and our nurse says that follow up of some kind is expected and some babies get followed every 2 or 3 days. So I think that means we've got good news for now about his eyes.

Vapotherm

So you can see where Will falls, here are the criteria for leaving the NICU:
1. Maintain body temperature - CHECK!

2. Outgrow apnea of prematurity and bradycardia

3. Take all feedings by mouth on an ad lib schedule and steadily gain weight

4. Breathe without oxygen

There are exceptions to these - some babies are sent home with oxygen, an apnea monitor, or a feeding tube. It's possible that one or more of those could happen for Will, but for now he is expected to accomplish all of these successfully.

The last 3 that Will has to work on are connected quite a bit. He stays on oxygen (4) to help with the apnea or brady spells (2). [I'll take another shot at explaining Will's spells. We have called most of them apnea but if you read the link above it explains that apnea & brady spells often happen together. And remember those Tet spells? At first we thought there were some, then they said he's never had one...basically it's hard to tell. Now maybe you can see why I'm not a fan of that monitor that alarms when there is a spell. It's confusing. Also I think I'm now hearing those beeps in my sleep.] Also most babies can begin to coordinate sucking and swallowing by 34-36 weeks, but they won't try to feed Will by mouth (3) until he's off the Vapotherm machine which is what is giving him the oxygen (4). It's harder to get the sucking and swallowing down with air coming into your nose with so much force.

The MRI and sleep study that were suggested recently have been discarded for now. The attending doctor schedule changes quite a bit around the holidays. The new attending doctor that came in the next day prefers the wait-and-see approach and wants Will to have more time before exploring those options. They are still looking at the possibility of reflux but we haven't seen proof that keeping it in check is helping. The only other news I have today is that Will had another echo. We're looking forward to an update on his little ticker.

Grumpy face

~Jody

*there's a stumped team of doctors

December is almost over, and Will is almost 2 months old!
Earlier in December he was treated to a visit from his Nana.

Chris & his mom.

Will got lots of sweet gifts from family for Christmas as well as a visit from his Tennessee grandparents. Thanks to one of my aunts, we started the tradition of reading the Christmas story on Christmas day.
Alert: Will's first opportunity to name drop. The NICU babies got gifts from Tim McGraw & Faith Hill.

Now for his health: Will's doctors are stumped. By now his spells should be gone and they aren't. Some days they are few and mild and other days frequent and more serious. We have been waiting to see if they go away with age. It could be that they will stop as he gets closer to "term", which is about 3 weeks away. Even though he is close to that time, the doctors feel the spells should have stopped sooner. There are a few things they plan to investigate over the next week to see if they can get them under control. The first is whether or not he has reflux. His feeds have been adjusted to see if there are any changes in the spells. If reflux is the problem, then there are a number of things that can be done to help - medicines, changes in the way he is fed, etc. If there is no reflux then they plan to try an MRI of his head and a sleep study.

In the meantime, Will has already checked off one of the requirements of going home - maintaining his body temperature! Since he doesn't need to be in the temperature controlled isolette he is ready to move to a crib soon. We are increasingly invited to be more involved in caring for him. We can hold him more often but can't walk around with him since he is attached to machines. Also, he absolutely loves being swaddled so we are glad we learned to do that around his tubes and wires. His regular care (diaper, temperature, etc) is still scheduled but if we are there at the scheduled time we are welcome to do it ourselves. Will has good nurses that involve us as much as possible.

We are often asked when Will might come home - we expect it to be very near his due date, January 18th. It could be sooner, but probably not because of his breathing troubles. We are hoping that he is discharged just as we finish getting ready for him. And if not, we at least have his car seat so we can get him home! The rest can be taken care of later.

The featured pic of the day: Will's photo on the door of his room, decorated by a nurse so he looks like a little Santa!
Next on our agenda for the blog is videos! We have some but don't quite know how to share them yet.

~Jody

*there's the night before Christmas

Will's gift from the hospital was a new NICU room today. No special reason - his pod had just a few babies so they moved them to be able to clean it while it was empty. The new room looks almost exactly the same but is a little bigger.

The nice thing is that our neighbor remained the same. When another baby in the pod does something that causes an alarm to sound, a little window with their information pops up on the monitors of the other babies. This is so a nurse will be alerted even if they are in another patient's room. Our nurse told us that when Will has a spell and his info pops up on our neighbor's monitor, the parents cheer for him. We've never met them but we have figured out that they have newborn twins and only one is in the NICU. I don't know what that is like, but they must be so tired! They are having sleepless nights at home with one, while visiting a sick baby every day, AND bothering to cheer on our little boy's heart rate and oxygen saturation! Very nice neighbors.

Will has had a couple of days with more apnea spells than usual. Due to this the attending doctor decided to try having the lid of his isolette up for awhile. Since Will is dressed most of the time now, the thought is that he might be too warm which could be leading to more spells. We like this because we can reach him and see him so much better! They also checked to see if he has an infection which explains the splint on his arm in the picture below. He is getting antibiotics because his blood culture was positive for infection, but for a kind that is consistent with contamination. The possibility of infection has been looked at several times before and isn't concerning to us, we just haven't had pictures of the splint before.

Getting back in bed after Kangaroo Care and getting weighed.

4 lbs, 6 oz!

Picture of the day: Will with his big boy pacifier!

~Jody

*there's Santa & Mrs. Claus

This shirt was a sweet gift from one of my camping friends, but Will didn't know he was supposed to pose so we could see it.

Today was the first time I got the feeling that he wanted to say "No more pictures!"
Here was the main event.

I just noticed that Santa & Mrs. Claus look like cardboard cut-outs, but I promise they were real. They came to see all the babies at the NICU. We plan to put this in a frame to bring out for the holidays every year. We will have to tell Will the story of how excited his parents were that he got to get his picture made with Santa while he was in the hospital. (Mainly because it will NEVER be so easy again!)

The best part of the weekend: Will has officially doubled his birth weight. 4 pounds now!

~Jody

*there's more Christmas

hospital sights

room decorations from Grandmother McHugh

notes from nurses

a doodle from Nana

holiday cards and artwork from special friends G,E,&MF!
[that's me in orange holding Will wrapped in blue]

Pictures with Santa tomorrow!

~Jody

*there's his first outfit

It fits!

Puppy dogs everywhere.
Close up pictures make him look so big!

Yesterday I came to visit at lunch and saw Will dressed for the first time. He doesn't have any IVs anymore so his arm doesn't need to be exposed. He does have wires coming through the buttons in the front. Those will be there the entire time he's at the hospital. I was hoping to be able to dress him when this time came but I forgot to tell that to anyone. I need to make sure they know we would like to be there for future firsts.

Not only is Will's IV gone but he is only getting 1 medicine once a day by mouth. They believe that a medication they were giving him to prevent a Tet spell (related to his TOF) was actually giving him more apnea spells. He is still having apnea spells, but not as often. For the most part, Will's job now is just to grow. Growth will help the apnea go away. He's doing a pretty good job!

Will is definitely on his way to getting into a regular crib. They will gradually see if he can maintain his body temperature without the help of the isolette. I don't know how long that will take, but it will be a sign that he's very close to coming home.

~Jody

*there's 6 weeks

*there's an artful doctor

I mentioned before that someone on the cardiology staff was an artist. It is actually Will's surgeon. He uses pencil drawings to help show different parts of the heart before and after repair. There is a short video about it here. We're anxious to have some drawings like this of our own.

Now for the real news: Will is 6 weeks old today and he now weighs 3 lbs 13 oz!

Here is the little sign that hangs on Will's bed:

The staff names aren't listed on there right now but they are definitely worth mentioning. The nurses are very good to us. I was advised by experienced friends to get to know the staff that takes care of Will. It does help us not worry as much when we can't be at the hospital to know that they are there.

~Jody

*there's a marsupial

Click here to read a summary of research about Kangaroo Care.
If you only have a minute, skip to the interesting part about body temperature.

I was told to wear a button down shirt for Kangaroo Care day. It turns out I only own 3 button-down shirts. One is maternity, one is from college, and one is from high school. Leave it to Kangaroo Care to bring this to light. The one in this picture is circa 1995 (the college button-down).

*there's a baby

3 lbs, 9 oz!

Will had a photo shoot yesterday. His nurse realized he was getting a good case of cradle cap and took off the cpap head gear. He was so happy without having air forced into his nose. We got several really good pictures! Surrounding his bed and laughing about how cute he is was much different than the usual - quietly staring at him while he sleeps. Something he very much needs to do. But this was much more fun.

Getting his hair combed.

Then the cpap came off completely.
He opened his eyes.
And sneezed!
Then he stuck out his tongue
and showed off his freshly combed hair.
He finally looks like a baby!

The 2 reasons he seems more like a baby to us now are 1)his eyes were open and 2) we can hear him cry! We think he avoided opening his eyes with the cpap because the air would come out the sides of the mask, go around his nose and blow straight in them. It was probably loud also so I doubt he could hear much. As for crying, with the ventilator his cries wouldn't make a noise because of the tube in this throat. There will be many times we will wish we could turn the crying off but right now it is a welcomed sound.

Today they decided that he was struggling with the cpap so much (meaning taking the mask off or the prongs out of his nose when no one was looking) that he could step down to the nasal cannula again. Since his nose was sore the trade off of him being comfortable was worth the decrease in breathing support. This picture is from my lunch break. By the time I came back after work he had worked the little piece of tape on his nose to a spot underneath his right eye.

The other event from yesterday was the holiday party at the hospital. There is an organization for families of children with CHD that meets monthly there. They are currently without a name but clearly aren't new to this. When we walked in the room I was stunned to see so many children. I don't know what I expected...I guess I assumed that every other family is just like us with a NICU baby that hasn't had surgery yet.

I saw someone I know from college who has a son with CHD and at age 3 he has survived 3 open heart surgeries already. There was 20-30 children in the room of all ages and only about 3 of them actually looked like they had a health problem of any kind. Several others were small for their ages, but since we didn't know their ages they looked healthy to us. There was food, a craft for the kids, a clown, and pictures with Santa. It was very nice and as far as the kids knew it was just a fun party. The parents were so knowledgeable and spoke highly of the cardiologists and cardiothoracic surgeons. One day that might be us and Will might be one of the kids jumping into a pile of bean bags. :)

The featured pic of the day:
rosary beads brought by Will's Nana on stuffed Katie.