*there's a date

Will's surgery date is set for April 28th!

The cardiologist is pleased with his growth (finally!). He weighs 10 lbs 9 oz!

We also saw a GI doctor this week to see if we can get Will's reflux under control. His medication has been changed and a nutritionist will be helping us with the feeding plan. Will currently takes 78 MLs every 3 hours of breastmilk fortified to 26 calories with a formula called Neosure. We try to feed him with a bottle and whatever he doesn't finish goes through his tube. Although this has helped him put on weight, as I've mentioned before Will doesn't get hungry. When we left the NICU we thought that he would only need the tube for awhile and eventually he would eat everything on his own. But he isn't taking more by mouth like everyone hoped. Maybe something can be modified to give him a chance to eat a little more normally soon. 

When one of us is away from home, the other sends a cellphone picture so we can see what Will is doing. This is the one I sent Chris on Friday:

And here is one he sent me today:

He looked so grown up in his outfit and little shoes!

*there's a worthy cause

In honor of Will's OHS, we're having an unofficial, unlocalized (and very unorganized) blood drive. His surgery will require the use of a heart lung machine which has to be primed with blood before the surgery starts. I'm hoping to be able to do a directed donation for this since Will and I have the same blood type.

I should state that there isn't anything about Will's surgery that makes blood donation crucial. I'm not even sure why I had this idea, especially since Will won't actually receive your blood. This is sort of like us knowing a hungry family but asking you all to donate cans to the food bank nearest you for other hungry families. I do think blood donation is an extremely important service that is not very popular. This seemed like as good a reason as any to encourage people to either give it a try or work towards donating their next gallon. 

If you have never given blood or haven't in a long time, here are some fun facts:
*You don't have to know your blood type.
*You can give blood every 56 days. That is up to 6 times per year.
*You can now donate blood when you are as young as 16 years old.
*People with O- blood types are universal donors and anyone can receive their blood.

Here is the breakdown of how blood can be given:

Blood Types:    Possible Recipients:

O                       O, A, B, AB
A                       A, AB
B                       B, AB
AB                    AB

*In my opinion, it is the easiest community service one can do.
*They make you have a snack before you leave! What could be better than that? At my local Red Cross they have cokes, juice and treats like these:

Maybe in Pennsylvania they give out these?

[In searching for that graphic I discovered you can order cases online! I think Chris and I might need to order a taste of PA to help us through the stress of the surgery don't you?]
We have several blog followers in Florida but I don't know the snack cake of choice in that region.

The only requirement for participating is that you do this in honor of Will. His doctor suggested that we not make any requests for other direct donations in case someone is unable to donate for reasons that they would rather not disclose. So there is no need to even let us know if you have donated. If you aren't able to donate for a temporary reason (travel, antibiotics, having a cold) then please try again as soon as you are able. If you aren't able to donate for a permanent reason (travel, health, medication) then please try to encourage someone you know to donate blood on Will's behalf. This can be done with an email to a few friends.

A few more interesting facts:
*Your donation of 1 pint can help up to 3 people.
I was thinking about Children's Hospital and I wonder how many units of blood are given there every day. I read that 1 in every 10 people admitted to a hospital requires blood. Remember that children aren't able to donate blood to replace what they have used...so a children's hospital literally needs our help every day.
*Only 38% of Americans are actually eligible to donate blood and only 8% actually do. This is according to the Red Cross who I will be using for our direct donation.
*This may sound like a cliche but it really does make you a hero.

So start taking your iron pills and eating lots of seafood or steak or raisins! (This means you Liz.)

Remember, and I cannot stress this enough, this is an unofficial blood drive for Will. If you go somewhere to donate and tell them it's for him they will have no idea what you are talking about. This will forever be one of those silent good deeds that remains between you and God. Although telling this story could be a good icebreaker for making conversation to the other donors lying next to you!

While doing my research I came across this statistic: If you began donating blood at age 17 and donated every 56 days until you reached 76, you would have donated 48 gallons of blood, potentially helping save over 1,000 lives! I'm sure that has never happened, but there is an incredible 90 year old woman who has donated more than 25 gallons of blood in her life.

I will write more about this at some point but just wanted to get everyone thinking about it and planning.

I leave you with a picture of Will from our rainy Sunday afternoon.

We see his cardiologist again this week and are hoping by then he has reached 10 lbs. We'll keep you posted!

*there's another photo opp

Oops! Will's feeding tube came out tonight. We have to take pictures when we get a chance. Otherwise how will there be a slide show celebrating his high school graduation? Or better yet, we could have a slide show celebrating the last day he has to have that feeding tube! Since today was one of those rare days when I was out of pajamas and had brushed my hair we had already taken a picture earlier in the evening.

 

I think I mentioned once that Will likes to hold hands. He still does. If he can't get your finger in his hand he will grab whatever he can find. Here he is with my hair in his fist:

Cute tummy!

Mommy & Will:

Getting a kiss:

Thanks to my mother who came to help with Will today while I got some things done!

*there's a trip to the park

His first park trip!

On Sunday the weather was nice so we took Will to the park. Will isn't supposed to be in public to avoid getting exposed to an illness. We figured him being out in the open wasn't the same as being in close quarters around people. Especially since he was covered with a blanket most of the time because the sun was in his eyes.

There were birds everywhere!

Are you ready for the curl?

Can you find it in this picture?

How about now?

*there's his first appointment

with the cardiologist! We had (well at least I had) been looking forward to it. First he was weighed, measured, had blood pressure taken and his oxygen saturation was checked. The topic of oxygen saturation is a blog post in itself, but today it started out at 78. 78?? That was odd. Good O2 sat is 100. In the 90s is also acceptable. My understanding is that everyone will have drops in sats at different times of the day and that is normal. The doctors are okay with it when Will's sats are in the 80s, which happens at times. If you've ever had one of those clamps on your finger with the red light on it, that was a pulse oximeter measuring your O2 sat. [for the record, we are almost as tired of the word 'sats' as we are the word 'spells'] For babies the pulse oximeter is a small light attached to something that resembles a little Ace bandage that usually gets wrapped around the foot. When Will is in the hospital it is monitored constantly and shows up as one of the numbers on the monitor that you've seen pictures of in the past.

When the doctor came in the room he checked the O2 sat again and it got as high as 90. Now that made more sense. We didn't get a date scheduled for surgery yet. This will depend on what his O2 sat is at the next appointment, and possibly the next one. If we see a trend of it being in the 70s then it will tell us that Will needs surgery a little sooner. If it stays high then we can wait longer - enough for him to gain 2, 3, maybe 4 more pounds. Weight today was 9 lbs, 2 oz. They say the heart is about the size of the person's fist. I'll have to get a picture of Will's fist at some point. As much as I want the surgery over with, if I were a surgeon I would want someone to do me the favor of letting the heart needing surgery to grow until it's as large as possible!

These 2 pics were taken with my phone. The quality isn't good but the content is worth it.

 Sleeping and....

Surfing?

 

Smiling!

Coming soon....a curl is born.

*there's a movie & a some heroes

I was going to wait until we had actually seen it to share this, but that might be awhile. I checked it out from the library once but realized we didn't have time to sit and watch a movie while Will was in the hospital. What was I thinking? Maybe we'll try to have a movie night soon.

Something the Lord Made was released on HBO in 2004. It is based on a true story and was nominated for and won several awards including the Emmy for Best Made For Television Movie.

Here is a summary I found on the Johns Hopkins website where the surgery was performed:

"HBO’S new film, Something The Lord Made, starring Alan Rickman, Mos Def, Mary Stuart Masterson, Kyra Sedgwick and Charles Dutton, tells the moving story of an unusual partnership at The Johns Hopkins Hospital between one of the nation’s pioneering surgeons, Alfred Blalock, and his young African-American lab assistant, Vivien Thomas. Coming of age in different worlds, they nevertheless forged a poignant and sometimes stormy relationship to develop the so-called Blue Baby operation and usher in a golden age of heart surgery. The Blue Baby operation, which surgically corrected a congenital defect of the heart known as the Tetralogy of Fallot, broke the last barrier to operating directly on the heart, long considered taboo and an impossibility."   

The reasons this is interesting to us is because not only is TOF Will's exact heart defect, but the setting of the movie begins in Nashville at Vanderbilt. If you do actually watch the movie here's a clarification...the surgery developed in the movie is the Blalock-Taussig Shunt. Although I'm not positive about the details of Will's TOF, I don't think the shunt will be part of his repair.

Will was born during a fortunate time. I found this statistic here: "From 1940 to 1959, only 10 percent of patients born with complex heart defects survived to adulthood. By comparison, from 1980 to 1989, nearly 80 percent have survived." I couldn't find more recent information, but that was 20 years ago and I would guess that the percentage has only improved since. If Will needs an additional repair in the future, it is likely that something less invasive than OHS will be available and commonplace by then. I'm so grateful that Will's CHD isn't more complicated and because of medical advances he will probably only need a major surgery once.

Now for another kind of hero:

Olympic gold medalist Shaun White is rum.ored to have TOF.

 His bio acknowledges a heart defect that required surgery when he was young.

   

This is a lot more activity than we anticipated 

Will being able to do!

 Pretty inspiring.

*there's another trip home

Will came home on Thursday! After a lot of observation and some tests, they determined that he probably did not have a Tet spell and does not need surgery early. We still don't have a date set for his surgery but will be sure to share as soon as we know.

I will write more soon but have another correction to a previous post. Thanks to my Aunt Linda, we actually do have a book about babies. We have had it for months and had completely forgotten! Doctors sometimes hesitate to answer my questions about typical baby behavior. I think this is partially due to Will being premature and them not wanting us to have unrealistic expectations for him. That's understandable but not always helpful.

Now can't you see me sitting and reading with all my free time???

*there's picky parents

Chris and I are picky about some things like most people. He only likes certain sandwich breads and I am particular about pillows and chicken salad. I'm adding Nurse Snobs to our lists.

Being in a regular hospital unit with Will is new to us. He was an intensive care patient for 3 months so we really only know how they do things there. We are still learning the differences in that unit and this one. The patients here aren't as sick and are always on their way home. Families need to demonstrate that they can take care of things without help. I try to remind myself that the care is similar to what I had in my postpartum room. I don't mind doing more for Will but am needing to be reprogrammed. Twice this week Will has been fed an hour late because in the NICU the nurse would've brought his milk to me at the designated time. Here I mix the milk and formula myself, store it in the refrigerator in his room, prepare the bottles and use the feeding pump next to his crib when needed. Oh yes and remember to feed him.

Those are all things I can get used to. What I miss are our favorite nurses!! The nurses here are fine. They know what they are doing and they do a good job. They help me with things when I ask. But they just aren't OUR nurses. Millie and Derenda became our friends and unfortunately now our standards are so high they might be unattainable. Millie pays attention to every detail. Derenda answers any question under the sun. And both of them love Will so much. They have each come to his room to visit this week.

Having favorite nurses has it's downsides. They can't be at work every day. Another NICU mom, Melanie, reminded me that when you have 24 hour care, not every staff person is going to be great. That's true. Luckily I only felt the need to complain about one nurse during our NICU time. And I actually didn't complain, I just requested we not be assigned to her again. I teased our favorites that we wanted them to work 24 hrs a day (with an occasional bathroom break of course) so we wouldn't have to meet any new nurses. This week I've considered forgetting about the nurses altogether and just going about our day. But that is difficult when I've seen how great it can be. We miss our nurses.

I was sharing this wish with a friend today who offered to pray specifically that we find some nurses that are a good fit for us on this floor. When it was time for the evening shift the prayer was answered!! (Thanks Noelle!) We like this nurse! We won't always mesh with the personalities we encounter, but when we do it changes everything. This one has admired Will like all nurses do, but she also has tried to get to know us. It's just a good fit.

I will point out some other good things about this unit. On the NICU floor I got a meal voucher for the cafe as a breastfeeding mother. Wonderful to have but the selection was limited. Here I actually get room service! I have a whole menu to choose from and it is brought right to me. And in the few short days we've been here volunteers have: informed me when the play room is open if I want to get toys, said I can help myself to treats from the care cart (hand sanitizer, etc), offered a book from the book cart, and best of all - come to Will's room to sing and play guitar. It was the sweetest Twinkle, Twinkle and Itsy Bitsy Spider I've ever heard.

One department in which Chris and I are not picky is family dinner night. Every now and then dinner is served in the Ronald McDonald room for hospital families. It's convenient, we don't have to decide where to eat and we don't have to spend a dime. We enjoy it no matter what they are serving and the people that serve the food are fun. I hope we make the time to help with that some day because it would really be missed if it stopped.

As for Will's week here, we should find out something soon. We suspect he will be discharged since the spells he has seem to be reflux/feeding related rather than complications of TOF.

Correction: Will actually weighs 8 lbs, 9 oz, not 9 lbs as previously stated. I'm blaming our confusion on the metric system.

*there's a tradition

 Here are some pictures from Sunday, February 21st.

Will's NICU discharge day!

 

 

The NICU nurse that oversaw our car seat installation gave us a big thumbs up on ease of use with the car seat we chose. She had to participate in a FIVE day training on car seat installation. I thought that would be really boring, but after hearing her talk it actually sounded interesting. Among other things, it involved putting several different types of car seats into many different types of cars. We chose this one because of the safety ratings. Plus we liked the orange color. She gave our car her approval as well because it is easy to get an infant seat in & out.

Here's the tradition. After this year of hospitalizations is over, Will will come to see his cardiologist annually. So every year I plan to embarrass him by making him take a picture with this statue. I think it's called Circle of Peace, and it is a life sized ring-aroud-the-rosie (or is it -rosey?) outside the front door of Children's Hospital.

This was my first attempt while waiting for Chris to pull the car around. Convenient for everyone because I don't think Chris wanted to participate in the embarrassment.

  

These 2 are my favorites:

 

One day he should be able to hold hands with those kids! And when he's 12 and 15 and 18 he will be towering over them. Assuming he doesn't refuse to participate in my project.

And don't worry, the temperature was about 60 degrees that day so we weren't letting him freeze without a blanket. (Although we did forget to bring a blanket.)

 Here are some pictures of Will's home equipment.

  

 He finally fits in his Phillies onesie from our friends Josh and Steph!

 Doesn't he look so big??

And this is Chris in his Phillies shirt at Will's first appointment with the pediatrician.

The pediatrician is in the same building as the Maternal Fetal Medicine group we visited while I was expecting Will. The building is so nice. We love this place!

Here is Will napping in his luxurious swing. I call it his throne. It is so soft and comfortable! Don't steal this idea, but Chris wants to find a way to make these for adults.

 

On Saturday Will's feeding tube fell out. I'm 99% sure it is because I hadn't taped it securely. After consulting with the home health nurse, it was decided that it needed to stay out for awhile and reinserted about a half an hour before his next feeding. So I took advantage of his clean face and took pictures of him in his portrait outfit. Maybe I subconsciously didn't tape his tube securely with this goal as a potential benefit. I had been hoping to have his picture made professionally for awhile now but wanted to do so without a visible feeding tube. I was unfortunately unable to recreate a professional portrait in his poorly lit nursery with my little camera. Attempts at better lighting credit goes to Freddie. Outfit credit goes to Julie. I was afraid we would never get it on him before he outgrew it!

 

  

 

 

  

 I don't think he loves the hat.

*there's a hospital trip

Quick update on Will: Sunday morning Chris suspected Will had a Tet spell. The things we are to look for are: a morning time crying session, usually related to going to the bathroom, his color changing to blue, and it lasting longer than his more common shorter spells. Chris wasn't exactly sure his color was blue, but it wasn't his usual color either. Even though we see that sometimes it doesn't usually last more than a minute or two. We called the cardiology office and they asked that we bring him in to the hospital to be observed overnight. So here we are, back in the hospital!

Despite not wanting to be at the hospital in theory, we are both glad that we came. It is a relief to have so many people watching to make sure he's okay. I think the cardiologists will talk to the surgeons and discuss whether or not to send him home, go ahead and do the heart repair, or do a partial repair with the full repair happening a little later.

Otherwise, Will has gotten so big! He is 9 lbs now. He really did gain weight well for the week that he was home.

We will obviously keep you updated as we know more.