Happy New Year!!!

At Elle's month 2 appointment, her she checked out by the docs as looking great. Her lymphocyte count is slowly increasing to 175 and she is almost 16 pounds-on track with Maddie's recovery. We started her on solids, and on day 3, she went so far as licked her lips and smiled. What an eater! I tasted the organic apple, carrot, and parsnip pureed combo, and it was pretty tasty. Yesterday, we had sweet potatoes - not such a hit. She has started to always try to roll-over and is very vocal and opinionated these days...I am wondering if she learned this from big sister or if it is just innate.

Maddie is as energetic as ever. Since Fernando's mom has left and the Au pair has been on vacation, she has been speaking more English and Fernando said her Portuguese pronounceiation has gotten worse. I think it is because my Portuguse that I speak to her is so bad. The little comidian is currently obsessed wtih taking off her pants and diaper. Fernando fed up after days of this fixed that by putting her in overals. Now we know why we received 10 pairs as hand-me-downs. I am getting Maddie tested for speech therapy on Monday to see if her delay is due to being bilingual or due to being tube fed. In late March, we are going to get her tested to see how her immune system is working. If the tests come out well, then we would stop all of her medications in June.

We spent all day opening Christmas presents, and we were exhausted. Maddie kept yelling a-bi-cah and trying to climb the baby gate protecting the tree (open in Portuguese is abrir). It was fun. My mom came over and brought lunch. Christmas Eve, Fernando managed to cook a 3 course meal (oysters, poached cod, and lamb) even with Maddie running around trying to get into the cabinets and garbage.

More pics

In support of Movember, Elle and I posed. However, Elle just kept trying to lick her stache. Below, Maddie is practicing to be a doctor on her cell phone.

Day something...and we are home

We made it home - alomst 2 months ago. The docs let us leave Nov. 10 without even an arm wrestling match. Apologies for the late post. The girls are doing great. Maddie had a few days of extreme jealousy but is starting to play more with Elle - at least we make them play together (see video below). Fernando's mom left us this Dec. 1, so we stopped eating well...and almost had to start wearing dirty clothes. We are both back at work which is where we get rest from the chaos of 2 babies at home.

Day +21–When we Learn we can Pack our Bags

 

Today we talked with the doctors and we’ve got our “get out of jail free” card! Elle’s levels have hit a stable plateau which will trend for a couple months as it makes a slow rise to relatively normal levels. We can keep watch on things now back at home in Seattle.

We will be leaving on Wednesday which is not too soon since Elle is getting really tired of turning into a Jedi for self-entertainment. She also consistently passes out on the bottle at the mere view of the camera. Fernando hasn’t been outside the hospital building in 12 days and out of the room for more than a total 2 hours during the same time. It’s sort of like living on a boat without ever being able to jump in the water.

 

Maddie's Day + 438

So Maddie was Princess Leia for Halloween. Someone thought she was a white angel because she refused to wear the cinnamon buns. I was wearing them hoping that people would figure out her costume. However, I just looked weird while Maddie still looked super cute. We went trick or treating with the new Au pair, and Maddie wouldn't stop taking candy and putting it into her bag. So we only needed to stop at 2 houses.

I will say that life with a grandmother and an Au pair is pretty fabulous. (Sorry Fernando.) If I had full time help like this per kid, I would have more.

Day +17

 

Elle and Fernando moved to a new room recently. There was a banging noise coming from the bathroom water pipes. Thuy had put up with it for over a week but Fernando broke down and told the charge nurse he was “going crazy in here”. We had mentioned the noise for 2 weeks but it takes a person to say they’re losing it to get things done. Evidently it’s bad form if you start off on the pediatric floor and end up in the psychiatric unit. Got to remember that one! As of now they still haven’t fixed it and Fernando can still longingly hear it at night through the walls.

Elle’s blood results may have hit a bottom plateau which is great since it means we’re getting closer to going home. She’s happy, very squeaky and doing lots of tummy-time.

Day +11 Halloween at UCLA

 

Today the hospital celebrates Halloween by having the kids who can move around go around to the nursing stations to trick or treat. For those who can’t leave their rooms, a reverse trick or treat is done by having volunteers go around to the rooms. Since Elle doesn’t have teeth and can’t eat chocolate, Fernando had to eat on her behalf. He may lose his teeth when he gets older.

Elle used her powers of the force to bring out the little Yoda in herself and charmed the nursing staff in the process. The Force is very strong with her as proven by initial results given to us by the study Doctor that Elle has the highest ADA enzyme activity in cells re-infused back into a patient. Now that means the cells that have been modified with the new ADA gene are working very well. Could that be comparable to Mitaclorians in Jedi? Too soon to say. In about a month there will be a test to see how many of the new cells actually engraft. Long live the Rebellion!

 

Day +10

 

Best quote today from one of the docs was “ You have the healthiest child on the floor!”. Sometimes I think they’re bored with us since there isn’t enough to teach the interns. This is a teaching hospital after all.

Elle is doing well and progressing through the steps needed to leave the hospital. Her blood levels have gone down a bit as expected as she rides the neutropenic see-saw and makes a B-line for the “safe” zone.

Today Thuy flew back to Seattle to get some rest, get out of Groundhog day, and be reminded how Maddie is a handful. Good thing Fernando’s mom is taking care of her and we have a nanny. It’s 3 to 1 right now, so it’s a fair fight. Fernando flew in yesterday to take over duties with Elle.

First thing to do was get Elle into shape with some tummy-time – how cute is this?

 

Day +6

Aunt Emi and Al drove down from the Bay Area to help babysit me. Al (AKA the baby whisper) watched Elle sleep to allow me to go and breathe some non filtered hospital air and drop off the laundry. I would call it fresh air, but I am in the middle of LA, you know. Elle was great for him and only cried 3 times. Each time after Al calmed down from the panic, he just put her pacifier in her mouth and patted her butt (her off switch). She fell back asleep all 3 times. Emi brought me food from the outside world which was wonderful. Elle and I both cried when they left. Elle enjoyed the visit to play with someone who wasn't me.
Elle continues to do well and be quite the trooper. She still has digestive issues and lots of gas which is quite painful for her at times. I hope this is the bottom and we start to come up. She still continues to be super cute and playful. It's amazing to see the transformation out of the "4th trimester." She has mad skills now of grabbing her toys and bringing them to her face. She was sitting on Emi's lap at a 45 degree angle and pulled herstlf to a sitting up position - we were all amazed. They grow up too fast.
I've asked Fernando to post some pics of Maddie. So, if you are wanting to see those, please send him an email to him. I miss her loads and can't wait to see her next week-though I am equally sad to be away from Elle.

Day +4–Almost neutropenic

Elle continues to be very cute and doing well. The key blood indicator that we watch (ANC or absolute neutrophil count) to show her progress on how the chemo is working is starting to drop to the level where she is classified at most risk of getting a bacterial infection. Maddie was neutropenic on day 11, but the doctor says that Elle dropping this early is in the same range as some of the other children in the study. If things continue to go well and if Elle’s levels start coming up, there is a some hope that we can go home earlier. There is some risk that the drop is due to an infection, but we are watching her temperature and demeanor carefully.

Fernando somehow figured out that Elle likes the song Smelly Cat from Friends. Here is Elle smiling, doing her new sucking sound, and finding her hand.

It’s been 4 days, and I have only left the room once.  It actually isn’t that bad since Elle is a good sleeper.  My days are divided by reoccurring activities that last between 15-45 minutes:

1. Feed Elle
2. Put her to sleep
3. Actively play with her
4. Ignore her (other parents may call this allowing her to develop independence by playing alone
5. Actually let her play by herself and sit next to her watching
6. Surf the internet with her sitting on my lap
7. Carrying her around the 10x15 room
8. Talk to anyone who comes through the door and not let them leave

Elle has fashion freedom

This is my current favorite new Elle face. She is growing and developing like a weed and is doing great so far - back to her normal playful self. Elle was disconnected from her IV yesterday, so she is free to move around the room without being connected to a pole holding her IV fluids. This also means that she can wear 2 piece outfits - oh the fashion freedom! She will continue to get blood draws at least 2 times/week which means we may need to handcuff her back to the pole. From a mother's perspective, I feel like I have a new baby again! While she was hooked up to all of the monitors, we had to keep her in her crib a lot. Now that she is wire free, it is great! Just sitting with her on the couch feeding her is a wonderful feeling...and easier on my arms and back.


So, I've been alone with Elle for over 48 hours in her room. I haven't left this space, but I did open the door to look out the hallway. I know - crazy. We do have a view outside which helps though the rainy LA weather has been reminding me of Seattle. Random that Seattle has sunshine right now and LA has rain. Luckily, Elle is a great sleeper which makes this solo schedule much easier. She sleeps through the night from about 8 to 5:30 only waking to eat. She then goes back to sleep in until about 8 then will just play in her crib until I decide to get up to feed her. She is on a pretty regular 1 hour nap schedule 3x/day. Let's hope this continues at least until Fernando gets here next week to swap shifts.


Fernando has reported back on Maddie and that her personality is even stronger than it was before. She has now gone from dropping food on the floor to flinging it across the room. Sweet. I have a baby monitor in the room that I am going to try out. I am going to sneak away to get some food downstairs from the cafeteria. The nurses station will listen and if Elle cries, they will send in reinforcements.

Day +1

Yesterday once again, a PhD carried the stem cells over from the lab.  There was a lot of discussion on guaranteeing that the cells belong to Elle since there was only 1 identification number (standard hospital procedure is to have 2) and her name was not on the syringe containing the cells (to hide her privacy in the clinical trial results).  Finally Dr. Kohn said that Elle’s cells are the only cells that have been in the lab all month, so there is no way there could be a mix-up.  Elle did great during the transfusion.  She was super mellow (a little sleepy from the Benadryl) and just laid there and watched as the slight chaos happened around her.  There were 6 PhDs, 2 RNs, and Fernando and I with the least number of initials behind our names.  Elle was being monitored all night post transfusion which means there was constant beeping.  That combined with this weird banging sound occurring in the water pipes in the wall was the formula for a poor nights sleep for both Elle and I.  Now we just keep Elle infection free and hope her new and improved stem cells graft.  Congrats little one for being such a fighter and making it this far – and looking so cute all along the way.

Fernando flew home to sleep in comfort yesterday.  This morning when Maddie first saw him, she looked at him like she didn’t know him.  Then she pointed at him and said “Pa Pa!”  Her newest skills include climbing up on the dining room chair and removing the vent covers.   I can’t wait to see her again late next week.

Day -1

Today Elle sat up for the first time. Fernando says it is because she is like a bean bag with her pudgy tummy supporting her in the sit up position. She is feeling a lot better and has been quite chatty and more smiley. For the past few days, she has only been smiling at Fernando. She won't even look me in the eye, but today, I was able to get a few great smiles from her.

The weekends are normally quiet here. Yesterday, the pediatrician normally following Elle had the day off, so Dr. Champagne (yes, that really was his name) took over. The attending doctor didn't have his normal entourage of fellows, med students, and interns. We call them the gyno girls even though that is not their specialty. When you spend 24 hours a day in the hospital, you have to find something to entertain you. I really think the doctors here (at least the fellows and med students) are more attractive than the national average - so LA...

So, what was on our agenda today, ie what will we search for online ad nauseum? What new car I will get after the Jeep (or the go cart) goes to car heaven.  I think watching the nice cars getting valet parked is getting to us.

9 AM - Fernando narrows the decision to Audi A4, BMW 3 series, some Lexus sedan, or Jaguar.  (Jaguar is soon nixed as we see the price tag for the entry level model.)
10 AM - I decided I wanted a Mercedes C Class sedan. Fernando tries to convince me otherwise.
1 PM - We now want a car that we get to go to Europe to pick up. Fernando is ok with the Mercedes since we can go to Stuttgart to pick it up.
5 PM – Since we live in Seattle, we decide to wait until an electric car or electric hybrid comes out. Mini E and Audi come back into the picture as potentials.  So, hopefully our backs and the Jeep can last until at least 2013. 

That's a full day for us. I'm tired. Now it's time for us to read by flashlight so Elle will sleep...

Where is Elle being treated?

Here’s where we are at UCLA. The facility is called the Ronald Reagan Medical Center and the Children’s wing we’re in is called Mattel Children’s Hospital – so we get free toys delivered by ex-presidents.

 

Rooms are nice and modern, some have PlayStations and they all have flat screen TV's. From our window we can see all the nice expensive foreign cars being taken away by the valet service. When we have nothing else to do, we can do some celebrity sightings as we’ve been told the floor just below is very popular with the stars on rehab. Everyone here is beautiful.

Day -3

Elle is sleeping right now and receiving her single dose of chemo. She weighs in at 6.545 kilos (almost 14 1/2 pounds) - only 4 pounds less than Maddie. She's been doing great - strong like bull (said in a Russian accent). All the doctors and nurses talk about how beautiful, cute, and mellow she is. Obviously, they are not in the room to hear her wrath when she is hungry.

The report so far is that her marrow looks good. They were able to get a good harvest which is always the problem when they get a baby so young. We keep hoping that nothing goes wrong in the lab. Today, they are starting to add the virus to the stem cells in hopes that the fixed ADA gene will get inserted into Elle's stem cells. They will do this for 3 days, and on Monday (Day 0), they will wash the cells, test them for any bacterial growth (we need this to be negative), then transfuse the cells back into Elle. We are wishing the next few days will be uneventful.

Last night as we were trying to watch the Colbert Report on Fernando's laptop, we got the Windows 7 blue screen of death. Why Bill why? I think Fernando and I have been through enough. Is it because I work for Adobe now?

The eye of the hurricane

Elle is doing well today, and the plan is for a non eventful day. Yesterday, Elle went to surgery and when she came out of sedation, she was a little groggy but sucked down her bottle like a champ. She was a little whiny a few hours after surgery, so the nurse gave her some morphine for the pain. I could tell she was having longer dream cycles and was more animated in her sleep than normal. No one knows in babies, but the adults who take morphine talk of crazy dreams. Let's hope Elle's dreams are good ones. She spiked a little bit of a fever yesterday, so Fernando and I monitored her temperature every hour or so through the night. Between that and the beeps of the IV, it made for a long and rather sleepless night. Today, she is smiley and back to normal, but she is still a little sore when we pick her up. Tomorrow, Elle gets her chemo, so it will be busy with blood draws every hour. Since Fernando has been her main caretaker for the past 2 weeks with me having the cold, she only looks and him and has smiles for him. Let's see if I can change that next week when Fernando goes home to help take care of Maddie.

What is it like for the parents during a hospital say like this? In the evening around 8, Elle goes to bed. She does not like light or noise, so that leaves Fernando and I on our laptops with headphones in the dark. See picture to your right. It really is not more fun that it looks...

All you single ladies - there's a hot surgery fellow that came in to check on Elle. He came in last night, looked at Elle and said "Hey buddy!" Fernando said, "Uh, she's a girl." I can't wait for her her wounds to heal a bit so she can get out of the hospital gown into some normal clothes. Let me know if you want to fly down for a visit to check out the hotties and see the Elle the cutie.

A walk down memory lane

We are on Day 2 of being at the hospital, and I already feel like Bill Murray on Goundhog Day. Even though Fernando sits on the other side of the not so large hospital room, I have already started to IM him rather than talk. We recognize about 1/3 of the staff here since it has only been a year since we were here with Maddie. Initially, we would see someone and say hi and try to remember where we knew them from - college, friend of a friend, etc. However, it is always that they helped care for Maddie last year. Walking through the halls and on runs to get food is way too familiar - as Heidi would say on Project Runway - "and not in a good way."

Yesterday, the nurse was unable to get the PICC line into Elle (re-run of what happened with Maddie last year), so we move to plan B which is to get a portacath on Wednesday. The portacath will be used to get blood samples, administer her chemo, and to potentially administer any other drugs in case she gets an infection. Today was a medically uneventful day except that we discovered that Elle's IV came out. The site had already clotted, so we have no idea when it came out. So, tomorrow at 3 AM, Elle will get a new IV in preparation for tomorrow.

We took the opportunity to get Elle baptised by Fr. Tom (pictured left). As he is from Long Island, I like to call him Fr. Tommy. We had plans to baptise Elle last Wednesday in Seattle, however, Fr. Jordan caught a cold, so he had to cancel. They do the baptisms enough here that he showed up with a fairly sterile ziplock bag baptism kit with a felt gown, candle, shell to hold the holy water, oil and rosary. Unfortunately, Elle's God parents (Michael McDonald and Fernando's sister Theresa) could not be here, so we will try to do another ceremony for both Maddie and Elle as soon as their immune systems can handle the germy crowd in the church.

Tomorrow starts the first of the 5 days of her therapy with the portacath insertion and bone marrow harvest. On Friday, she will receive her chemo if they are able to get enough stem cells from the harvest. On Monday, if there are no problems with the gene transfer, then she will receive the transfusion. Any prayers and good thoughts and vibes totally welcome.

Everything is fine at the home front in Seattle. Fernando's mom is really enjoying looking after Maddie. She does take about an hour to go to bed and keeps looking for us - which breaks my heart. However, I know she is enjoying spending the quality time with Avo.

The nurse we have today told us about her prior job in Hollywood at a high-end emergency clinic that catered to the wealthy and movie stars. Management asked her if she wanted to get preventative Botox, and nutrition told her at 5'7", she should weigh in at 116 pounds. She knew she needed to get a new job. It reminded me about the 15 minute screen interview at Andersen Consulting. Everyone knew it was just 15 minutes to cut the unattractive ones...

We are at UCLA

Fernando has amazingly kept himself and Elle cold free. So, we left last night and made it to UCLA. The airport was very quiet (thank you recession) and the journey quite uneventful. We compare everything now to our experience last year. The admission office couldn't figure out what to do with us at midnight, so I told them that I should just go up to the 3rd floor which is the pediatric ward. The woman looked at me with those "I don't know about that" look, and I told her that I did this last year with my daughter. She said OK, and we made a run for it. We didn't look security in the eye and made it to check Elle in.
1 AM - get the room - it's a double, would we have to share?
1:30 AM - finish getting checked in by the nursing staff
2:00 AM - Night attending doctors check Elle out
3:00 AM - Nurse comes in for blood draw/IV
5:30 AM - Fernando feeds Elle
6:00 AM - Elle gets her vitals checked
6:30 AM - Get moved to new room which is a single! Smaller than the one we had for Maddie but works just fine.
8:30 AM - BMT docs check Elle out
9:00 AM - Dr. Kohn (PI in the gene therapy trial) checks Elle out; sign a bunch of docs
10:00 AM - Breakfast
10:30 AM - Elle goes under to get her PICC line
During this time, I think Fernando got 15 minutes of sleep and I managed about 3 hours. How's that for uneventful.

Leaving Maddie was harder than I expected; however, she is probably being taken care of even better by Fernando's mom, Avo. So, we did what other bad parents like us do - we loaded up on toys that will be evenly distributed to her for the week we are away. Moments like these really cut through your heart and redefine what it means to have a child.

Maddie and Elle both get cuter and cuter every day. Maddie's sassy personality is really starting to show, and Elle is getting very chatty with her more distinct coos. As for Fernando and I, we just keep ageing and wonder how this all started and we dream of the days when we can all just exist as a family free of some of the anxiety. A nice beach, lapping waves and giggling children would be nice too.

Sunday cannot come soon enough...

We are down another soldier. I am sick with the cold. We are 3 for 5 in our house, but the only critical one is Elle. We are desperately trying to keep Elle infection free, so Fernando is working from home to take care of Elle. Look how upset she is after only 5 minutes of Let Your Baby Experience What You Do For a Living Day. I don't know if you can see it, but this conference call is making her foam at the mouth.

I think Maddie has forgotten that she has a younger sister since we have been keeping Typhoid Mary away from Elle. We are on Day 8, and Maddie still has a runny nose. However, she is back to her screaming self and is eating better, so we are hoping that this is a sign that she kicked the bug. I don't know how much of this was from her Vivaglobin or from her own immune system. The doctors told us that Maddie's symptoms from a cold would most likely be the mildest since she is getting the shots, and so far that is proving to be true.

10 days and counting

Maddie is sick with a cold. This is the second time she has been sick, but the first time since treatment. She has a runny nose, is a little more clingy and more excitable (she already is an 11 on a scale of 1 to 10 on being excitable). She is still very cute and playful, though. At this point post treatment, the doctors are not too worried since she has been doing so well. We are just tracking and keeping her away from Elle - which is our main concern. If Elle gets the cold, this would delay us taking her down for therapy. She can have no active infections when she undergoes the bone marrow transplant and chemo. *Sigh* At this point, we will take anything you can spare to get her to, through, and post treatment - prayers, good vibes, witchcraft, voodoo, etc.

On a happier note, Maddie is getting very crafty which makes me kinda proud. On Monday night, Fernando wouldn't let her go to the dining room because the mess she left from dinner was still on the floor (which is her favorite time to play with food). First she tried just using her super strength to run through Fernando. Then it was time to call on her toddler lightning fast speed to run past Fernando. When those didn't work, she turned to trickery. She pretended that she wanted Daddy to read a book to her. When she positioned herself so that she could make a straight b-line to the dining room, she threw the book at Fernando and made a run for it. After we all calmed down from laughing, Maddie's final attempt was to crawl to the dining room because maybe we wouldn't see her if she crawled instead of walked.

Other than being in quarantine, Elle is doing well. Her lymphocyte count dropped way down from a high of 2600 to about 750, and the doctors just say that is just what her body is doing. Other than that, she is growing like a weed. She is still the super cute squishy, coo-ey baby but growing way too fast. She is sleeping great through the night, but I am waiting for someone to invent a baby bed that heats up and is cozy called "the womb." Elle is only taking naps in her baby carrier. Why can't someone invent a crib that looks like a chest with bendy arms that heat up? As soon as I see an info-mercial, we are totally there,.

We have Elle's planned schedule. Sunday, October 10, we fly down to UCLA. Monday, they run various tests, and Tuesday, Elle will get her bone marrow extraction and CVC (central venous catheter) to receive the chemo and transfusion. On Thursday, she will receive the chemo, and the following Monday, Oct. 18 she will hopefully be transfused her new and improved stem cells. After that, it is a wait and see game and pray for her health.

So, I thought I had a great idea and buy us all matching pajamas. It ended up being a little weird, but still kinda funny.

Last weekend, Fernando came down with Elle in the morning, and her eyes were goopy from a blocked tear duct. I asked if he washed her face, and he replied "No, I am a bad Dad. I guess I could just say 'No, I am a Dad.'" Oh the start of a typical Saturday.

Entering week 7 of having 2 children

Yesterday afternoon, we took Elle and Maddie to the zoo. Ironically, we didn't see many animals I guess because they were sleeping, and Maddie was most excited about the squirrel and the crow. Today, Maddie decided to start Fernando's day at 4:30 AM. By 9 AM, Fernando and I were both exhausted but at least both kids were napping. Tomorrow marks Elle's 7 week birthday. She is growing like a weed and starting to grab her toys. She gave us her first social smile at 5 weeks and 1 day. We are still trying to teach Maddie to be gentle with her new little sister. Unfortunately, Maddie does not know her own strength and still tries to swat at Elle and grab her feet. However, Maddie continues to throw tantrums, learn new words and skills everyday, and is too cute!

Elle has her appointment with the Immunology team at Seattle Children's on Tuesday. We will start discussing scheduling her for the qualifying tests to get her into therapy and are hoping to head down to UCLA beginning to middle of October for therapy. The FDA lowered the age limit to 1 month; however, the bone marrow transplant doctors do not want to perform the marrow harvest at this young of an age. They feel that the baby's bones are too immature to get a good harvest, and their recommendation is 6 months to 1 year. However, no one knows if doing the therapy will get better results at 3 months or younger. There is no research that there is or is not any substantial benefit because of the immaturity of the immune system. So, the principal investigator is willing allow Elle to enter the therapy after she reaches 5 kilos (she was at 4.51 at her 5 week appointment). It's a wait and see game.