Happy Halloween!

We hope everyone had a great Halloween. Carly took to the idea of "frogging up" like a true Nelson/Nunes and had a great day in her frog suit. We closed out the night watching the live webcast of the Widespread Panic show and Carly danced the night away.

Love,

B, C and c

Bumps In The Road

Carly got her first high chair today and enjoyed eating apple sauce and pears as her first meal in it. She was given a cute new hat too which is perfect timing because the bandage on her head was removed on Monday and the bump on her head is back. Next Monday she will have another ultrasound to make sure the fluid isn't increasing the pressure on her brain, but judging from the last ultrasound we don't expect that it is. We were told that sometimes this happens after this type of surgery and that it often takes several rounds of "tap and wrap" (drain the fluid and then wrap her head in a bandage) before it completely heals.

Carly continues to do well otherwise. The ophthalmologist said that there was noticeable improvement in the past week in her ability to control her eye movements. A development specialist brought Carly a few new toys to play with and she particularly likes the red pom-pon and Mardi Gras beads. We will make sure that the red pom-pon is swapped for a gold one soon, they may be having a terrible football season but she still has to support the Boilers.

Love, Brad

Wrapped Up

Carly has been wrapped in this bandage since Thursday to help discourage fluid from returning to the space between her skull and skin and was clearly happy to have it taken off at her appointment this morning. She is still rubbing her head and moving it back and forth to scratch the back as she is eating now. Dr. Gupta was happy with how it looked and said to leave her head unwrapped for a few days to see how she responds. There is already some fluid pooling back at the site now so we will see how it goes over the next few days. They can manage it either way, but it is preferable that swelling does not return.

Carly is doing well and we certainly appreciate the baby gifts, hugs, phone calls, cards and blog comments. You are all a great support to us.

Love, Brad

Lighten Up

Carly just returned from a quick procedure this morning to drain the fluid that was trapped between her skin and skull. We were in the same room we brought Carly to before both her biopsy and tumor resection surgery and I think we all had a few flashbacks, but this time the doctors were finished in less than 30 minutes. They removed 200 ml of fluid, almost a half pound, so I imagine it will be a breeze for Carly to handle her lighter head now. Her head is wrapped in a tight bandage to discourage the fluid from returning, and Dr. Gupta will check her on Monday to see how things look.

Our other appointments this week have gone well and all of the various specialists are very encouraged by Carly's progress. She will start having weekly home visits to help with her vision development and we will continue to get blood tests for her sodium level every other day. A few of the doctors, including the director of the ultrasound lab, have mentioned that Carly's tumor was the biggest they have ever seen in someone her age. While this isn't the type of record we wanted her to set, I have a feeling it is not the only record she will be breaking in her lifetime.

Love, Brad

Carly Goes Bananas

Carly continues to do well as we get ready to start her developmental therapy tomorrow. There has been one possibly major improvement over the last few days related to her sodium control. Since the surgery Carly has not produced enough of the hormone ADH which the brain sends to the kidneys when it is time to stop peeing. Without this hormone the body continues to pee and can quickly become dehydrated to a very serious level. We have been administering daily shots of DDAVP to compensate for this hormone in addition to closely monitoring all of her inputs and outputs. It has now been 93 hours since we have last given her a DDAVP shot, and her sodium levels are still in an acceptable range. We are not certain that her body can control this completely on its own, but this is a very encouraging sign that she is on the road to recovery.

Over the last few days the area around Carly's incision has swollen considerably (we have joked that instead of a forehead she has an eight-head.) To ensure that the swelling was not affecting her brain she had an ultrasound this afternoon. The results looked great and all of the key brain areas are healing well. To address the swelling Dr. Gupta will perform an outpatient procedure on Thursday to extract the fluid that is trapped between her skull and her skin. They will wrap her head in a bandage for a few days in hope that the pressure will discourage the fluid from returning.

The last bit of news from the last few days is that Carly has taken to eating solid foods like never before! Prior to surgery Christa had been working on getting Carly to like solid food, but it would take more than twenty minutes to get her to eat a few teaspoons. Today, Carly polished off a half container of banana baby food before moving on to carrot. This will make it so much easier to help her put on some much needed weight.

Love, Brad

Ready To Rock

Carly got a new hat today and she already seems to have gotten an attiude boost. We danced to some Widespread Panic while she was wearing it and it was easy to see that she was just counting the days until her next live show.

Love, Brad

Pass The Peas

Carly had her first meal of solid food since surgery, some delicious Gerber peas. She didn't exactly wolf them down, but she tolerated it pretty well. She sends baby love and little baby hugs out to all of you.

Love, Brad

Happy Christa Day!

The difference between a day in the hospital and a day out is beyond words really. It is a huge relief for both Christa and me, and Carly is clearly much more at ease and rested when she isn't being poked and prodded every hour or two. We got to celebrate Christa's birthday with her family and my mom at our house tonight which was yet another thing to be thankful for.

Carly had her first outpatient blood lab this morning, something that she will need to do every day for at least this week and at some interval for weeks to come. There is something to be said for someone who spends their entire day taking blood from little kids, because this nurse did an incredible job. She got the amount needed in a matter of minutes with very little crying on Carly's part (very different from the last 20+ lab draws that Carly has had to endure.) Christa said that this was another great birthday present. While Christa opened her other presents tonight, Carly spent much of the time entranced by a glowing egg. Too cute.

Love, Brad

Home

It has never felt so good to walk through our front door.

Love, Brad

Looking Ahead

It is looking likely that we will be heading home tomorrow! Christa can't think of a better way to spend her birthday on Wednesday than to wake up in her own bed without constant interruptions from doctors and nurses. I can't argue with that.

We are starting to get a clearer picture of what we will need to do for Carly in the coming weeks and months. Carly will have MRI imaging every three months to monitor the remaining tumor. Should it stay unchanged they will leave it for the time being. Should it start to grow significantly they will need to perform a second surgery which would be very similar to this round. There is a chance that if it does not grow appreciably before her third birthday that it could then be treated with radiation, but this is an outside chance. Because of the location of her tumor, there has been decreased function of her pituitary gland. At this point it isn't known if this is just a temporary issue while there is post surgical swelling in her head, or if it is permanent damage. Carly will need thyroid hormone replacement daily, cortisol replacement three times daily and daily injections of DDAVP to help control her hydration levels. At some point down the road they can test again to see if her body has healed enough to take her off of these medications and we will continue to envision this as the ultimate outcome. If the damage is permanent, it can be be dealt with using careful monitoring and medication and she can live a normal life in all other areas.

We will also immediately begin seeing vision and developmental specialists to ensure that Carly can make up for any lost time. We are blessed that we are already being connected with a great network of experts in these areas and we know that with some effort on our part and by Carly she will get where she needs to be. It is very clear to us that your love and support helped get us safely this far, and we will continue to need it as we try to get Carly back on the path that we have envisioned for her since she was born. Hugs all around.

Love, Brad

Birds Of A Feather

Today was beautiful day in San Francisco and the Blue Angels put on another show. Carly continues to do well, spending much of the day playing with her favorite stuffed animals. She even used her new tooth to chew on Big Bird's hand for awhile. Maybe she won't be a vegetarian?

Carly had two blood draws today which is never her favorite but she calms down pretty quickly afterward. I gave Carly a shot for the first time, something Christa and I will have to do once a day when we get home. It is now looking like Tuesday may be that day, but we know better than to plan on it. The most important thing to us is that she continues to get one step closer to a completely healthy brain.

Love, Brad

Carly's First Tooth

On top of all the other things Carly has handled here at the hospital, her first tooth just appeared in her bottom gum. She was so interested in this pack of crackers today you would think she was ready to put that tooth to work!

Love, Brad

Stir Crazy at UCSF

Today was a beautiful day in San Francisco and we enjoyed watching the Blue Angels flying over the bay and city from our room. Carly seemed to enjoy her first real breath of fresh air on the 6th floor patio and she got in several rounds of lap time and play time with us and both of her grandmothers.

After review by the tumor board, the decision for the next step has been made. We will be going home early next week once they have a good handle on her hormone levels and how to properly medicate to keep her in the right range. This will mean giving her several hormones on a daily basis, but with them and with so much tumor removed they expect her development to really start to take off. Her development will be closely monitored and every three months she will get an MRI to evaluate the size of the remaining tumor. If she develops as well as we expect and the tumor does not grow then they will continue to hold off on a second surgery. At some point some action will need to be taken on the remaining tumor, it is just not yet known if that will be in a few months or more than a year down the road.

Again we have to tell you how much we appreciate all the love, support, and strength you sent to Carly and us during this long week. I am convinced it made this time easier on us and that it gave Carly the extra boost she needed to get this far. She will continue to need your help as she moves on to the next step on her way to full recovery and I know that you are all there for her. Thank you so much.

Love, Brad

Movin' On Up

We were finally moved out of the PICU to our own room on the general pediatric floor. The room decor may be straight out of the 70's, but the view of the Golden Gate Bridge and Mt. Tam make up for it. Even better, our whole family can sleep in the same room for the first time since before the surgery.

Today they also removed every wire and tube that had been attached to Carly. We can easily hold her, and tomorrow we will take her for her first walk outside for some fresh air on the 6th floor patio. We also expect to hear the next steps in Carly's treatment plan tomorrow. It seems that this will likely be a second surgery several months from now, giving Carly time to grow and develop before going through this a second time. She has already shown us that she is strong enough to beat it.

Love, Brad

One Week Down

It amazes Christa and me that only one week ago Carly was just about finished with her marathon surgery session. It has been the longest week of our lives by far, but it is also pretty incredible how far Carly has come in such a short time.

Today Carly had a CT scan to evaluate the swelling in her brain and everything looked good. They removed the drain from her head and used one stitch to close the hole. Although Carly didn't particularly love this it has made moving her from her bed significantly easier and we are one step closer to moving out of the PICU. I can't tell you all how much your support and love has helped get us this far, we appreciate it each and every day.

Love, Brad

Getting Stronger

Carly continues to improve and is acting more and more like herself each day. Christa was able to breastfeed Carly for the first time today and both were very happy to reach this milestone. Carly never really liked bottles before the hospital and she doesn't seem to see any reason to start now (her stubbornness is another great sign.)

We are still in the PICU (pediatric intensive care unit) with two final hurdles to cross before we can move to a regular hospital room. Since the operation Carly has had a drain line in her head to manage any excess fluid that was likely to be produced after the operation. They have been monitoring this and expect that they can take this out either tomorrow night or Wednesday. That's hurdle number one. They are also trying to get Carly's sodium levels under control, a critical part of hydration and proper bodily function. This has been fluctuating a bit, which is not unexpected, but it requires hourly checking. Once this stabilizes we are free to move on to a standard hospital. You would never think that a regular hospital room could be something so revered but having a private bathroom, room for two parents to sleep, and freedom from a myriad of wires and constant monitoring will be great.

Love, Brad

My Ladies

Here is a photo taken of Christa and Carly today. Carly is eating from a bottle now, and she seems to have a big appetite. This is a great sign this soon after surgery, and an indicator of how strong she is.

Love, Brad

Post Op Progress

Yesterday I fell asleep before I could send out a Carly update. Overall she is continuing to improve and a lot of critical levels are approaching normal. She didn't sleep for the first 32 hours after the surgery, but is now managing to get in some naps. They warned us that on the second day post op patients are usually at their most puffy (the entire body swells up after a procedure like this.). They weren't kidding, as she was swollen from head to toe. She still looked as cute as a button, just a larger button.

We spoke a bit with Dr. Gupta and he continues to be happy with her progress. He seems fairly certain that a second surgery is in her future, the question being whether that would happen sooner (a week) or later (several months to a year+.) We will be in the ICU until at least Monday, and then we should start to get a more firm plan on the next steps.

Thanks for the continued support, it is definitely helping power us all through this.

Love, Brad

Recovery

Today went extremely well considering what Carly had to go through yesterday. All of the doctors are surprised at how quickly she is bouncing back. She was awake almost the entire day and we did our best to distract her from playing with the various wires and tubes that she is connected to. Her favorite ball and Waddles the penguin got a workout.

Carly had another MRI this afternoon to provide a clear picture of what tumor remains. This will help the team determine the next steps. Just a few minutes ago they removed Carly from her ventilator so she can breathe on her own. It was so nice to see her cute little mouth again.

Love, Brad

A New Day

After a few hours of sleep curled on the chairs of the 6th floor waiting room, it felt great to see Carly's cute face. She is on a breathing machine and they are trying to keep her sedated but she seems to have other ideas. She is waving her arm around and scratching at the sheets like she would at home. She is acually able to move around all of her extremities now. They didn't know they had a Nelson/Nunes on their hands.

The surgery took longer than anyone expected because the tissue ended up being more fibrous and vascular than anticipated. This meant they had to move slowly and replace a lot of blood along the way. Dr Gupta said that the tumor had a well definied boundary and should they decide on a second surgery he expects that they could get out quite a bit more. They stopped when they did because 15 hours is a long time for a little girl to be under anesthesia. We will learn more about the next steps as they observe Carly over the next few days. Thanks again for your continuing love and support. The nurse said that Carly is a very strong baby and we know that you are all contributing to that. Keep up the good work!

Love, Brad

Surgery Is Over

Well it was a long stretch there, particularly since the last update that we got, but surgery has finished and Carly is doing well. They were able to remove about 75% of the tumor but it was a difficult case for them and they did not want to push her any more. They are going to monitor her for a few days to determine the next steps which may include a second surgery in the next week or so.
We will keep you all posted, now it is time to get some rest. We love you all.

Love, Brad

...Still Waiting...

No big surprises with the most recent update. Carly is still going strong and the doctors are whittling away the tumor. There is still no estimated finishing time, which means there is still more than a few hours to go. All of the love and support that you are all sending to Carly and us is really helping as the day goes on.

Love, Brad

We're Still Waiting...

The latest from the OR is still good. Carly is very stable and the anesthesia team is happy with how she is doing. Dr. Gupta is slowly and carefully working away and they expect several more hours ahead.

Love, Brad

Hard At Work III

The latest update is more of the same (no relation to John McCain.). Carly is doing great and they are slowly removing the tumor.

Love, Brad

Hard At Work II

We just got our hourly update from the OR. Things are still progressing well and Carly is good. The tumor is a bit adherent to adjoining tissue so it is slow work but they feel good about it. It will be many more hours before they are finished, thanks for all of the uplifting comments.

Love, Brad

Hard At Work

The latest update is that Carly is still doing really well. They are making good progress and expect that they will still need to work for quite awhile. She is surrounded by positive light.

Love, Brad

Progressing

The news from the OR is that everything is still going well. We can feel all of the loving support from you all.

Love, Brad

Underway

We just got our first update from the operating room. Carly went to sleep very easily and everything is going well so far.

Love, Brad

The Big Day

Wednesday is finally here, and it is time for Carly to get this tumor out. We are walking up to the hospital now for our 6:30 check in. We expect that Carly will go under anesthesia around 7:30 and at 8:30 they will begin the surgery. The surgery could take eight hours or more so it will be a long day of pacing around UCSF. Fortunately they will phone us every hour or two with updates on Carly's progress and we will have family and friends with us to help pass the time. I will try to post updates to this blog from my phone as they come today as long as technolgy doesn't fail me.

Christa, Carly and I wanted to thank everyone again for all of the good wishes, positive energy and prayers that we have received over the last two and a half weeks. It really has been an increabile help during this time to have your support and love.

Love, Brad