BEST WEEKEND EVER

This week we've been cooped up in the house because the air quality has been so severely impacted by the 1100 wildfires all over northern California. However, on Saturday afternoon the ocean breeze came in, the sunshine made its way through the smoke, and we decided that we should take advantage of a couple of good hours outdoors before the bad air returned. So, on Saturday afternoon, Vita had her first picnic! She got lots of attention, and had a great time. We've been enjoying our lawn whenever we get the chance to. After all, having caused Vita's botulism, it may be the most expensive lawn ever so we might as well enjoy it... Good friends, a bit of food, a new cocktail that I call the "Laura Palmer", and life is good. Also, the very small fig tree that I planted when we first moved in (I call it "figlet") finally produced its first fig. On Sunday morning we slept in late. Then, Vita practiced more sitting up. She's doing great, and she can already sit up for five minutes at a time! Here's a side profile... Vita has also been saying "dada"! Actually, she's been saying "dadadadadadadadadadadadad..." Does that count as her first word? I say... YES, IT DOES! I've been trying to get a good video of her saying dada, but she's really good at stopping as soon as she sees the camera, so this was the best I could do. Now that Vita is sitting up, she can enjoy all of her old toys in new ways. This activity triangle is now more fun than when she used to use it during tummy time! And I just have to point out how cute this outfit is... check out her dinosaur onsie with a matching spikey pointed hat! The rocking chair is more fun now, too. She can rock in it all by herself! (Well, with VERY close supervision, that is...) Finally, to celebrate her new skill, we bought a "sitting up toy". She loves this activity table, and it's quite educational. It's got the ABC song, numbers up to 10, it operates in English and Spanish, and it operates in "learning mode" and "music mode" (as if music doesn't count as learning). Anyway, it's great, and it's something she couldn't have played with before she was sitting up. Also, as she starts learning to stand, she can lean on this toy for some support. Here's little Vita playing indepently with her new toy. After all that has happened, I find so much joy in every little acheivement she makes... and every happy day that we share together seems like the best day ever.

Sitting Pretty

Paralyzing illness? What paralyzing illness? This baby doesn't look like she's recovering from paralysis. In fact, she's getting close to sitting up again. Vita can sit up for a few seconds, sometimes even a minute, before toppling over. Vita has also made peace with the lawn that might have given her botulism. (It's likely that when we planted this grass just a few days before Vita got sick, spores of botulism were released from the soil into the air, and Vita inhaled them.) Don't worry, it's safe for Vita to play on the lawn, and we plan to have a lot of summer fun on this lawn! Vita is also starting to eat more solids, including yam (which she loves). In this picture, Ernie is trying to feed her, but I keep distracting her.

は、公平な

Today, we went to the Japanese Cultural Fair. It was another beautiful, yet hot, summer day in Santa Cruz. The sky was blue, and the clouds were spectacular.

We slathered Vita up in sunscreen, grabbed a sun hat, and headed out. At the Fair, we met up with some good friends (not pictured... because we forgot). Again, Vita slept through much of the heat.

Once we found a shady spot, Vita enjoyed watching the martial arts demonstration and listening to the drums from afar.

She particularly liked the people watching from her unique vantage point. Vita loves being high up in the air!

Sorry, Vita. No green tea ice cream for you! Note - a good friend made Vita a dress with Japanese girls in kimonos... and I didn't think to dress her in that for the fair. D'oh!

Summer!

Today is the first day of Summer, and we're having record breaking heat. It was 102 degrees in Santa Cruz today! Fortunately, Vita knows how to beat the heat. She napped through the hottest part of the day, took a cool bath, and then while she was still damp from her bath, she was having fun "standing" in front of the fan. I think it's just about time to start stocking up on all kinds of summer supplies, like a kiddie pool, a sandbox, some bubbles... It's going to be a fun summer!

Fathers Day 2 - Conclusion

Here's Ernie and Vita wrapping up a boring (aka luxurious) Fathers Day with an afternoon nap.

Fathers Day

Happy Fathers Day to all Dads, most of all to Vita's Dad Ernie! To celebrate Fathers Day, Ernie and I did a little shopping (as I didn't have his gift yet... go figure) and went out to a huge sushi dinner. Then we came home and played. Here's Vita in some overalls that were once worn by her cousin Dan. Vita is waving hello. Isn't it great to see Vita looking like herself again? As you can see, Vita has Ernie wrapped around her little finger. It's so nice to have something to post about, other than illness and recovery. But, I suppose I'll give a recovery update too. You may have noticed that Vita has no more tubes! Feeding has been going really well, so Ernie removed the feeding tube today. Getting Vita to eat is still a struggle, and takes a long time, but it's happening. Although the tube is out, we'll continue to work with lactation consultants and weigh her daily to make sure she's gaining weight... but we feel confident that she's getting all the nutrition she needs. In fact, she'll probably start back in on solid foods next week. In other exciting news, Vita is finally big enough (sort of) to wear the cutest jacket we've ever seen. These pictures were taken yesterday, so Vita still had the tube at that point. The feeding tube didn't seem to bother Vita at all, but we're still glad it's gone.

Home At Last

At last... after 17 days, we've been released from the Stanford Children's Hospital! Vita is still learning how to eat on her own again. So, she still has the feeding tube going through her nose into her tummy (and she'll probably need the feeding tube for a while). Generally, the hospital doesn't like to discharge people with a feeding tube, so we had to prove ourselves by being trained on how to insert and remove the feeding tube ourselves at home. Anyway, no pictures tonight because I'm exhausted. We still have a long road ahead of us with intense physical and occupational therapy, and lactation and neurological follow up as well. But we're past the worst of it, and we're well on the way to recovery. Deep sigh... THANK YOU SO MUCH - to everyone who called, wrote letters, came to visit from close or from far away, who brought food and treats for us and the hospital staff, gave books and music and toys to Vita, who sent nice emails or posted comments, and kept us in your thoughts. We were so overwhelmed by support. There's no need to continue to post daily updates, so I guess this will go back to being a regular old baby blog... that I will update randomly with normal baby activities (along with period recovery updates).

Movin' On Up

More great news to report today. We heard rumors this morning that we might get kicked out of the ICU, and moved upstairs to "general care". I guess we're just not sick enough to hang out in the ICU anymore. Here we are sitting around waiting for rounds, so that we can officially get the good news. As you can see, they removed Vita's nose prongs. Vita has been breathing entirely on her own since 8am. Vita is quite happy to have one less tube. "Look Ma, no oxygen tank!" In other news, Vita did great on her swallow test, and she's been given authorization to begin eating food with her mouth. Here's Vita trying out a bottle (which is easier than breastfeeding at the beginning). At the beginning of each meal, we feed Vita a bit from a bottle. Vita has been doing really well with a bottle, but it takes considerable muscle coordination and stamina... so whatever Vita can't take in orally, we give to her through the feeding tube. Here's Ernie feeding Vita through the tube. Finally, here's Vita relaxing in her new bed in her new room. Although the accommodations in general care are much more comfortable, we're anxious to get back home. Soon. Very very soon.

Good Times in the PICU

We're having so much fun in the PICU that I almost didn't have time to post our progress for the day.

Vita still isn't breathing entirely on her own... but they gave her a smaller nose breathing tube so that they could resume feeding her. (The other nose breathing tube couldn't be used while feeding through the nose.) Below is a picture of her current nose gear.

Also, they've been turning down the settings on the breathing machine all day, and it's on the lowest setting now. Vita's breathing has been great, and they expect that she won't need breathing support much longer. However, she still hasn't cleared the goop out of her lungs, and the doctors are "mildly concerned" about that. (Vita doesn't seem concerned.)

We're still enjoying LOTS of cuddling and naps. Tomorrow, Vita will do a "swallow test" with an occupational therapist. If she does well, we'll get to try to feed Vita a little bit from a bottle. Then, if she does well with that, we'll get to work on breastfeeding again. There's talk that we MIGHT be moved out of the ICU tomorrow or the next day. That's going to depend on her breathing (which has been great) and her chest X-ray (which will hopefully show less lung goop). Despite the fact that Vita's recovery has (so far) taken a little longer than we expected, we are starting to notice big changes from day to day. We finally have our daughter back!

Back in Our Arms!

Oh, happy day! Ernie and I have been reunited with Vita at last! Vita has been doing well without the breathing machine, and they did remove her oxygen mask this morning... but she's still not completely ready to breathe on her own. Instead, Vita is now wearing little prongs that go into her nose. As you can see, the current breathing / tubing situation is much less intrusive, provides less support to Vita (so she's doing most of the breathing on her own) AND WE FINALLY GET TO HOLD HER! Here's Ernie withVita. And here's me with Vita. What a huge difference it's made for all three of us to be able to cuddle again. We all feel so much better. When I first held Vita again, we both cried for a couple of minutes, then she fell fast asleep in my arms. Human touch is the best medicine (well, along with crazy anti-toxins and stuff). Now that Vita has the tube out and the mask off, she was able to demonstrate to us that she's able to move her head back and forth from side to side. This means we can play peek-a-boo again! And Vita can turn her head to the camera to flash a big smile! So this is all very good news, and we're doing (and feeling) much better, but we're really not out of the woods until Vita can breathe with absolutely no support. Currently, Vita is breathing well, but she still has a "floppy upper airway" which is a residual effect of the paralysis. Additionally, when babies have a tube down their throat for two weeks, they cannot cough up their secretions. So Vita has some gunk in her lungs, and she's not opening up her lungs fully with all that gunk in there. The doctors dont want to take off Vita's nose prongs until her lungs clear up. However, while the nose prongs are in there they can't feed Vita through the tube anymore... so she really can't get any food dripped into her stomach until the nose prongs can come out. The doctors and respitory therapists are doing something called CPT, which is just some tapping on the chest to help loosen things up. Hopefully tomorrow her lungs will clear up and then the nose tube will come out and her feeding can resume. Until those things happen, we're STILL in the intesive care unit. I'll be so happy to transfer upstairs to general care, but it's looking like that might not happen until early next week. PS - Happy anniversary to me and Ernie. We've been married six years today (and together for 16 years). Times like these can be tough on a relationship, but even after all these years, there is no one I'd rather be stuck in a hospital with.

Waiting to Exhale

Today is day 13 in the PICU. The doctors have been telling us they might extubate Vita (take her breathing tube out) this weekend. However, this morning during rounds Vita put on a great show for the doctors. The docs spent all morning and well into the afternoon debating about whether to extubate her now, or to wait. There is no way to know for sure if she's ready to breathe on her own, except to take her off the ventilator and "see how she does". If this sounds nerve wracking, it's even more so because the last time they tried to extubate her it didn't work out so well and they had to put the tube back in. After weighing the pros and cons for hours, Vita's team of doctors decided to go for it... and the tube came out at around 3:30 this afternoon. Ernie and I waited with baited breath, and crossed fingers, and tightly held hands as we watched Vita try to adjust to breathing without the ventilator. So far, Vita is doing well... but it will take about 12 hours to really get a sense of whether or not it's working out. During these first 12 hours, Vita still has some breathing support with an oxygen mask. If all goes well, the mask will come off tomorrow morning, and then two VERY exciting things will happen. 1) Vita will breathe with no assistance. 2) I will finally be able to pick her up and hold her! Here's a picture of Vita with her mask on. She's smiling, and looks much more comfortable! Breathing without support is the first big milestone in her recovery. Once the docs are confident in her breathing, we'll be moved out of the ICU to general care. The next big milestones will revolve around sucking and swallowing (the skills needed to eat). Once she can breathe and eat, they'll discharge us from the hospital to continue the recovery from home. We're cautiously optimistic about Vita's breathing, and we'll be watching her very closely all night long. Keep your fingers crossed!

Caught on Tape

You have to look really really close, and you have to squint your eyes, and even then you might have to just take my word for it... but this is a picture of a miniature version of one of Vita's signature "tongue out smiles". See? Isn't that great!? Things here in the PICU are just about status quo. Every day we see little improvements in Vita. Every morning during "rounds" I hope that Vita will impress the doctors by demonstrating that she's strong enough to breathe on her own so that they'll extubate her... but every day she doesn't put on quite as good a show for the doctors as she does for me. One of these mornings during rounds, maybe Saturday or Sunday (they've already said no about tomorrow) the doctors will decide to remove the breathing tube. Until then, we just wait and wait and wait and wait and wait...

Six Months!

Vita is SIX MONTHS OLD today. It's kind of a bummer to be passing this milestone living in the PICU, but that's where we are. Vita really is doing better each day. I mentioned in a previous post that botulism recovery is often so slow that progress can be barely noticeable from one day to the next. I've been providing daily updates, but it doesn't always feel like I have much to report. In fact, I don't have anything very tangible to report today... However, Vita just "seems better". She's smiling a little bit more, she spends more time awake, she wiggles around a bit more, she's off the heavy drugs and just managing pain with Tylenol, and she just seems a little bit more like herself. In fact, she's even enjoying some tummy time again! And she's got her favorite toys gathered to wish her a happy half birthday. It's actually kind of interesting crowd... with a mutant gumby, a frog whose head comes off, and a cross-dressing monkey. Before the botulism, when I contemplated Vita's six month birthday, I felt like time went by so fast and I couldn't believe it was almost six months already. Now, time has stopped, and I feel like I've been in the PICU at least six months. Vita had achieved most of the six month milestones at five months, and I'm confident that she'll be better soon and will probably be back on track with her peers in a few months. While I sometimes still have moments of feeling sad or angry about this random and rare illness that came out of nowhere, I know that we have so much to be thankful for. Not all of the children in the ICU have a great prognosis, but Vita is still on track for a full recovery. So it's a very merry half birthday indeed!

We got a smile!

Today is Tuesday June 3rd, day 10 of our adventures with botulism. This morning, Vita seemed more more awake. She has started to suck on a pacifier a little bit (which bodes well for our eventual return to breastfeeding) and she smiled a real smile! She has tried to smile once or twice since this began, but this was the first real undeniable smile and it was great! Of course, as soon as I got the camera it was gone, so you'll just have to take my word for it. At rounds this morning, the doctors said there was a slim chance they may take her off the breathing machine Friday, but it will probably be more like Saturday or Sunday. This time I won't get ahead of myself by getting my hopes up too high. They'll extubate Vita when she's ready to breathe on her own, and that's not something to rush into.

Other progress to report: a little bit of vertical movement in one of her legs, and both arms and hands are moving horizontically and vertically, and working on pulling out her various tubes.

I know this picture isn't great, but her eyes are more open, so it's beautiful to me.

Life in the PICU

Well we're wrapping up day 9, and the doctors have said that they are in no rush to get Vita off the breathing machine. They'd like to wait and be cautious. They aren't even going to consider extubating Vita until the day after tomorrow, but they will likely wait even longer than that. Since they'll want to keep Vita in the ICU at least a day after they extubate, we are looking at nearly another week in the ICU before getting moved to general care. Since Vita had a bit of a rough day yesterday (having the breathing tube removed and then put back in) she was really tired today and slept almost all day. This is actually a good thing, as she was having a really nice deep peaceful sleep. Meanwhile, her body is still doing the good work of rebuilding those neuromuscular connections to reverse the paralysis, while she rests and rebuilds her strength. Presumably (fingers crossed) when she's done resting and wants to have more awake time again, she'll demonstrate even more progress. While Vita sleeps and goes in and out of some semi-awake time, Ernie and I pass the time hanging out close to her side. I'm just about out of songs to sing (I'm sure the nurses are relieved about that) so I've taken to reading Vita stories so she can hear my voice. Today we read the Velveteen Rabit. Even tired babies like to be entertained, and Dad has maintained his sense of silliness this whole time. Also, we're settling into more of a routine here in the ICU. We don't have a private room... in fact there are 4 babies (and their families) sharing our room with just curtains to provide privacy. However, we've really made ourselves at home here. The big news is that we finally landed ourselves a sleep chair, pictured below. This chair reclines and is (sort of) comfortable. Yay! Finally, the "child life" unit at Stanford is really good. They come around and make sure kids have developmentally appropriate toys for their stay here. They gave Vita a musical mobile and a dinosaur puppet, and the same little musical aquarium crib toy that she had on her bassinet at work. The staff here are so good, and they're taking care of Vita's physical needs while being sensitive to her emotional needs as well.

Not so fast...

Well, the plan to extubate Vita (remove the tube from her throat) didn't go as well as we hoped. The tube came out, vital signs were observed, and the tube went back in. Vita just wasn't ready. The botulism paralysis works from the head down, so the head gets it first and gets it worst. There's really no way to know when a baby with botulism is ready to breathe on their own. Sometimes you just have to try it out and see if it works. This time, when they put the breathing tube back in, the tube is going through her nose. So it might be a little bit less uncomfortable. This little setback is discouraging... but the prognosis for complete recovery is unchanged.

Maybe in a few more days Vita will be able to get off the breathing machine, and then I'll be able to hold her and feed her again. For now, we'll keep on holding her hand, singing, and delivering breast milk directly into her tummy through a tube.