Because I Know You Were Wondering

As you know, (but just in case you forgot) Daphne had surgery in November to repair her cleft palate. Her ENT told us it's typical for children to need another surgery a few months or possibly years down the road because sometimes the clefts can't be fully repaired the first time.

We met with him today for a 6 month follow-up, and he said her little mouth is looking good and she probably won't need another surgery! And while it's a little early to do a formal evaluation of her speech, it apparently comes in very handy that she is a chatter box. Just in his little interaction with her where she told him 'bye' (she doesn't like doctors) and rambled off a bunch of other words while he was chatting with us, he thinks she'll be in the minority of cleft palate kids who don't need speech therapy. Woohoo! Another round of doctors to check off our list.


















Of course you never know, all this could change, so we'll see the ENT in 6 months just in case. I'm going to start working with her to have The Declaration of Independence memorized by then, so that when she recites it for all the specialists they'll get a good glimpse of how perfectly she says all her words.

They'll say, "my, my, she is so bright!" and I will say, "yes, yes she is." It will be a really good conversation between the specialists and I.

#5

Oh house, how I love thee.

Daphne is happy to be home. She about had a baby heart attack when she saw the dogs. Every time I would bring her into the house she would grunt and angle her body toward whichever door was closest. OK, I can take a hint.

But now it's dark so she's watching G.I. Joe with her dad. And drinking milk! She's only had 8 oz in the past 37 hours, so it's nice when she asks to eat.



















Our big hurdle for the next couple of days will be giving her the medications. They taste gross, plus they hurt, so she's a big screamer when medication time rolls around. It was nice when I had a nurse at my beck and call to come give them to her. Anyone a nurse who wants to come live here for a week? I will make you farm fresh scrambled eggs every day. Probably for all three meals because we have lots of eggs.

#4

Daphne being watched over by Pumpkin Bear and the newest addition to our family, Christmas Bear.













Out for a stroll.





























"Look at me! I had some milk and it was yummy!"



















The milk euphoria did not last long.



















She napped for about an hour and a half in my arms once we got back from our walk. She's still sleepy, but so much better than she has been. She could have had meds an hour and a half ago, but hasn't seemed to need them. She's eaten twice today. Can we please go home now?????!!!

#3

Morning has come. We were definitely ready for it. Strange things start to happen when you've been stuck in a tiny room for 16 1/2 hours without stepping foot outside.














The night was a little better than we thought it would be. Last night around 7 I decided to see if she would be OK in her bed. Amazingly she rolled over and went right to sleep! An hour later the CNA came to take her blood pressure, which Daphne hates, so she woke up screaming. Seriously, do you really have to wake a sleeping baby for blood pressure??? Really?

Usually our family motto is "hugs not drugs," but in this case we're more like, "are there any drugs available? Can we please have them?" Once we gave her something and snuggled for awhile, she would be ready to lay back in her bed, where she would sleep until someone else came in and/or her drugs were wearing off.

But this morning a tiny bit of Daphne is starting to shine through. She'll try to talk or she'll wrinkle up her nose. But mostly she's just moaning and looking miserable. She needs to start eating and her pain needs to get a little more under control so we can go home. Hopefully later on today.

And by the way, can everyone who comes in here please just check her chart to see that she's a girl? I can't really put a flower on her head here, so I need ya'll to help me out. No more "him," please.

#2

Daphne is out and we're settling into our marvelous hotel accommodations for the night.

The doctor said she had quite a bit of fluid built up in her ears, so he ended up putting tubes in. Maybe now that she'll have perfect hearing she'll start saying "mama" instead of "wawa." =)

I knew this wouldn't be a fun surgery to recover from, but I think it's a little worse than I imagined. She's on oxygen from having a bit of trouble breathing. She has arm splints on to keep her from touching her face. I can tell she wants to eat but her throat is too sore from the oxygen tube and obviously the roof of her mouth hurts. Her pulse oximeter keeps going off because of high heart rate; she's pretty upset which is keeping her heart rate up.


























We're going to need about 37 cups of coffee to make it through the night, I'm thinking. And I miss my cheerful little girl who was wiggling around the waiting room this morning.

Poor baby girl.

#1

Daphne's surgery started around 10:30 and will take about 3 hours.

Here she is waiting with Pumpkin Bear earlier this morning. Poor baby, she has no idea. She just liked playing around in this cool bed.




















I was thankful that her nurse asked if Daphne would fuss when being handed over to a stranger. I said yes, so she was given some yummy drugs to make her nice and relaxed. We walked her back to the OR, and when the anesthesiologist took her, Daphne barely put up a fight. Of course it could have been weakness from lack of food. You never know.

Back to waiting...

Pre-Op

David was reading Daphne a farm animal book while we were waiting for her appointment to start. I kept hearing him say things like, "what does the pig say? 'Please don't eat me when I'm grown!'" and I would say "the book really says that?" Of course I knew he was writing his own story when the duck said "beat the Beavers."




















We found out we don't have to be at the hospital on Monday until 8AM! If Daphne was the youngest patient in for surgery we would have to be there at 6, which is just way too early to be driving across town. Plus her doctor says we will probably only have to spend one night in the hospital. Happy.



















Her doctor drew a picture of what he was going to do in her mouth. Eww. That's all I can say. Eww. He also talked about the arm splints little ones usually wear that keeps them from being able to put their hands in their mouths while they heal. Like the neck cone for a dog, but for babies. Again, eww. But he said if we keep a constant eye on Daphne to make sure she's not putting anything near her mouth she doesn't have to wear the splints.

Well, I figure Daphne is going to be really, really mad at us for a few days while she wonders why we made her go through this horrible experience. But it will be worth it when we don't have to use Haberman's anymore or worry about food getting stuck in her brain.

Daphne on Drugs

Daphne is snug in bed for the night, all recovered from her day at the hospital.

It took FOREVER for them to take her back this morning. There is a rule about getting the youngest patients in first, since it's harder for them to go too long without food. But for some reason they took this other little girl back before Daphne. She was probably 6 or so, and one of the whiniest kids I've ever seen. She spent about an hour screaming bloody murder as the nurses tried to get her IV put in, which meant Daphne had to wait a very long time for her turn.

Daph was none too happy about being forced to wait, but once she did get called back they gave her a lovely dose of something wonderful that made her nice and relaxed.

She went from making this face...



















...to this face...



















...very quickly.

Then she got so tired that her head just flopped over onto the vibrating, light-up toy that they gave her to play with. That was so funny.



















Thank you, Cindy, for your tip about staying with her until she went to sleep. The first time she had surgery they didn't even offer us that option, but today they told us that's what they would have us do. No stranger danger issues! Hopefully we can continue to do that.

Watching her wake up always provides a good laugh or two. I felt badly for her because I knew she was confused on why she felt weird. She was so loopy, but wanted to be free to play. Hard to do when you can't even hold your head up.



















She was back to her old self by the time we got home.

Thanks for praying for her today! She was a little trooper, and everything went perfectly. We'll have a follow-up appointment with her doctor soon to decide when her foot surgeries will be.

MRI Preview

Daphne is still back having her MRI done, but here are a few pictures of our action packed day so far.

This is Full of Medical Jargon

**I apologize for the insane length of this post. If you need to stop and take naps while reading, I completely understand. If you are going to skim, perfect, just don't ask me any questions about when Daphne's next surgeries are. Ha!













I don't talk a lot about Daphne physical issues, partly because I forget that some of the things she deals with aren't the norm. People might look at her and wonder about the kid with the weird leg issues, but I just look at her as the kid. No issues. Also partly because we don't like to make a big deal out of things. She's Daphne, we love her, she's fabulous, she's so funny, what else is there to know?

But this is going to be a busy fall for her, plus I've somehow gleaned some readers from far off lands who are probably wondering "what does that poor baby have on her legs?" So I suppose I should do a little update. This update will also help clarify why you'll be seeing a post or two from the hospital in the coming months.

Part One

Daph was born with talipes equinovarus. Do you like how I can throw out Latin like some sort of genius? Actually I don't even know if it is Latin, it just looks like something that would be Latin-ish. But you more common folk might know it as club foot. You can click here for a really clear and simple website that explains exactly what she has.

While club foot can appear for no apparent reason, her club foot is a side effect of her skeletal dysplasia. Daphne's type of skeletal dysplasia is unknown at this point, although the people who really are geniuses and who work at Cedars-Sinai Hospital are occasionally throwing out a gene test or two to test her for. All we know is it seems to affect the lower part of her legs (between foot and knee) and lower part of her arms (between hand and elbow) the most. I don't notice it so much in her arms (although people who don't see her everyday probably do), except that I have to roll long sleeves up for her. I think the shortness is way more apparent in her legs. So far in public we only get questions about why her legs are in braces, although I think people usually think she's younger than she is because she is kind of scrawny and of course, short.

But she's growing on a perfect curve that she's set for herself, and she's above and beyond doing everything a typical 9 month old would be doing. Go Daphne!



















We need to get her feet fixed so that she can start walking soon. (What? Walking? Noooooo!) She's had one heel releasing surgery and she needs to have at least one more. Her doctor wants an MRI done so that he can see exactly what is going on with her feet, because x-rays have shown her ankles might be structured slightly differently than one would expect. We go to OHSU Tuesday for the MRI. Babies are notorious for being very wiggly, so Daphne will have to be put under for the test to be affective. Blech. Her doctor mentioned he might do her next feet surgeries one at a time instead of both at once like last time, but we'll know more after the MRI.

We have paperwork telling us how to prepare for the MRI, and I was so happy to read this (bold print my own):

We may not be able to do an MRI if you have any of the following:
Some/most cerebral aneurysm clips
Artificial heart valve
A metallic foreign body imbedded in your eye

Whew, I am so glad they cleared up the fact that she cannot have a metallic foreign body in her eye. Any other part of her body is fine for the metallic foreign body, just not the eye. Good to know.

OK, moving on to Part Two

Also as a side effect of her skeletal dysplasia, Daphne has a small cleft palate. Hers is a soft palate cleft, meaning it's at the back of her palate toward her throat and does not affect the bone. If you use your tongue and follow your palate starting at your teeth and go back toward your throat, you'll feel hard bone and then suddenly just soft skin. (Please don't gag yourself while trying this experiment.) The soft skin is where her cleft is. It's really caused no problems except for affecting her ability to suck. I wrote this post explaining this a little. I think sometimes with solid foods if something is too big or too thick she has a bit of difficulty, but Daphne is the first baby I have ever taught to eat, so I don't know what non-cleft eating is like. For all I know the gagging and Joe's O's shooting out her throat at my face is completely normal. I do fear bits of food going up her cleft and lodging into her brain to rot, but I've been assured this is not possible.

She is getting her cleft fixed on November 23rd. Don't judge us for taking pleasure from poor Daphne's pain, but we were so happy to get her surgery scheduled for that day. This is the Monday before Thanksgiving, so now David will get the holiday off for family leave. Yes! I don't like it when David works holidays.

She'll be up at OHSU again, and hopefully we'll only have to stay for one night. I say hopefully because last time Daph had surgery she had a weird reaction to the narcotics and we had to stay longer than we expected. We hope this doesn't happen again.

In Conclusion - finally

None of these surgeries are really that serious. Like if you compare them to a heart transplant, they're not that big of a deal. But they're still not what I would call fun. I'm concerned about her mouth surgery, because how will she eat while she's healing? It doesn't sound fun to have your palate skin flayed off and put back together again. (That's how the doctor described it. Flaying.)

Also Daphne has SERIOUS stranger danger issues right now. I mean, crying buckets of tears when other people hold her. I imagine walking her back to the OR where I have to hand her off to the anesthesiologist, and she's crying and crying while reaching for me. And then I have to leave. Can we say not cool.

Alrighty, are you totally bored with the longest blog post ever? I personally only stopped for two naps.

I hope you all feel a little caught up on Daphne's busy life. And now you know when you can send her gifts, because you always need gifts when you're under the weather. I hear she likes large bouquets of flowers.

Here We Are Again

David is pacing the halls making Daphne happy, since she came out of surgery mad, mad, mad! She was super happy again early this morning, but now she's a grouch. I guess that's OK. She has a good excuse.

Pre-surgery, happy and alert:
















And now:


































David is happier than he looks in this picture, I promise.

If her tummy does fine we should be released in the next couple of hours. Then Daphne gets to make a trip back to her first home, St. Vincent's, to meet her new friend Lincoln who was born yesterday.

Home Sweet Home

I was surprised that Daphne slept just fine the first night we were home. Napping during the day has not been good, but I don't know if it's because she is sore or because she is out of sorts from being off her routine this week. Hopefully the napping gets better soon.

Look how excited she is to be home!
















She was lying on her activity mat kicking her legs around, but I was noticing she seemed to be leaning toward the side with her heavier cast. She would kick and then kind of tip over. Poor baby.















Her other foot seems to be sliding out of the cast. 4 more days...she just needs to keep it on for 4 more days.

Melissa is sad I can blog now. It is a huge responsibility, and I will do my best not to abuse the power. By the way, is is 6:30 pm and we are going home.

Part 5

I may regret having shown David how to use our blog...

Daphne is done and on schedule to go home around 7 tonight. The stomach thing from yesterday was possibly a combination of air from the breathing mask getting into her stomach, and then her insides being slow from the narcotics. We fed her soon after she woke up, but when we discovered her huge stomach and they pumped it, pretty much everything we had fed her came back up. So obviously her digestion capabilities were not so good at that point. So far her tummy is looking good!

Please note how large they made her left cast.















He also made it go as high up her leg as possible and put a really sticky glue-like stuff underneath to try to hold it in place. This cast better stay on!

We do have to come in next week, but hopefully won't have to spend the night.

Daphne went for a little hospital stroll earlier.




















Now she's taking a nap.






























They didn't give her as much sleeping meds this time, so once 9PM hits and I am ready for bed, I'm guessing she'll be wide awake and ready to play. No dopey Daphne today. Who's coming over tonight to babysit???

Part 4

Daphne has continued her Reign of Terror (as David put it) by kicking off one of her casts this morning. Being the official baby inspector, it fell of while I was up with her. If we were at home I probably would have called 911, and when the dispatcher scolded me for this not being a medical emergency I would have said, "open wound = medical, cast sliding off = emergency." At least in my book.

Apparently everyone around here is amazed at her kicking skills. I think they're considering naming a building after her. Something like "The Daphne Building for Retired Medical Folks Who Were Driven to the Breaking Point by Babies." It has a good ring to it, don't you think?

I don't even understand how she could have wiggled out of this. There's so much curve to it, so I don't really know how her calf, for instance, was fitting in the knee part.















Little Daphers has to be put under again today so that she can be put back together. Her doctor said he just might redo both casts and maybe we don't have to come in again next week. That would be nice. He also said she is his favorite patient.















Doing all that kicking makes for one tired baby.

Surgery Day Part 3

Daphne has run into another little problem: her IV's don't want to work! So far she's had 5, two in each arm and now the one in her head that seems to be OK, although she just had to have it fixed. Poor kid.

They had us stop feeding her for a few hours to make sure her stomach was back down to normal. Now she's had two feedings and it seems to be growing a little bit again...hmmm. In real life I've never checked her stomach size throughout the day, so of course we're not entirely sure what 'normal' is for her, but they're having us measure every so often. It's also very (not) surprising that one of her casts is sliding off. The doctor will have to check it when he comes back in tomorrow, but hopefully he will not have to put it back on because she has to be under for him to be able to do that. And to think we almost went home this afternoon! Did I mention that I'm the one who discovered her gigantic stomach? They should hire me as the official before-baby-goes-home inspector.

Daphne's feelings about the day:

a little bit mad















and a little bit dopey.
















Happy to be finally getting some food after being starved for so many hours.
















Our nurse in the recovery area gave Daphne an Olivia board book, so David read it to her. I love Olivia. She is such a funny little pig.

Surgery Day Part 2

Daphne was given the OK to go home by her doctor and the nurses, so I took off her little hospital gown to change her. Her belly was huge. I think I gave a half-hysterical laugh because the largeness of it was both disturbing and funny.

The nurse came over so I could show her and she said (exact quote here), "that's not normal, I'm calling the doctor." And off she went.

They're not sure yet why she has this weird belly issue, so we're staying the night for observation.

Next Wednesday or Thursday we're coming back to have her casts replaced. It will be the same basic procedure as this week with her being put under and all, so they'll probably have her stay the night in case this happens again.

Good times.

Surgery Day Part 1

Daphne woke up super happy this morning, which may mean she's a morning person since "this morning" means 5:20AM. For some crazy reason last night she didn't go to sleep until 11PM. For a girl who has a bedtime of 7 and hasn't been up past 8 in I don't know how long, 11 was rediculously late. She woke up at exactly 3 to eat, which was the time I was going to wake her anyways since that was the required 4 hours before surgery eat time. And she didn't seem to mind not being able to eat when she got up. Good for her!



































She went in for surgery at 7:30 and was done at 9:30. All is well! We may not even have to spend the night tonight. This probably means that I might need to be awake all night staring at her to make sure she's breathing. Unless I can find a nurse willing to come home with us...















The doctor was worried about her not having Achilles tendons, but of course the amazing Daphne has perfectly great looking ones. So he did his little snipping action and brought her feet up a bit. We'll come back in next week for new casts, and then I think those ones will stay on without being changed for a couple of weeks. Then she'll have to have those cool shoes with the bar between them for maybe 3-4 months to make sure her feet stay where they are supposed to. I think we're going to have to do some outfit modifications since she has so many cute jammies and such with feet in them, so hopefully I can find a person or two out here who is handy with a sewing machine.















Daphne is really funny waking up from her sleep drugs. It's too bad she can't talk, because I'm sure we'd be hearing some really entertaining things like this.















We'll be here for several hours while they moniter her, so we're just entertaining ourselves in our little recovery room.

Doernbecher, Here We Come

I realize this picture is a little blurry, but I love it when she has this little pouty face going on! She really gets that lower lip sticking out when she wants to. This one I happened to catch on accident only because our camera is so slow that it caught what she was doing about 10 seconds after I had already pushed the picture-taking button. (Are there official names for those things?)















She got to have another bath last night after I took her casts off. Last week I took off her casts Friday morning before her appointment; this week I was smarter and took them off Thursday night so that we could have more cast free time. She's so much more fun to hold when her legs are free! I never really think about it because for as long as I've known her she's been attached to something: wires and tubes in the NICU and casts as soon as she got out.

I think her legs are a little sensitive from spending so much time encased in plaster. She doesn't mind when she's dressed or wrapped in a blanket, but when I'm changing her she's not very happy, and she doesn't like you to mess with her feet. Poor baby. Mike the cast guy said it's probably not pain, just hyper-sensitivity from not being touched for 2 months.

Her surgery is set for March 25th. We'll be at Doernbecher at 6AM, and then stay the night in our own private room. David and I have had a tradition since we've been married to go out to the Gorge in March or April and stay the night, just as a little R and R away from the city. Doernbecher...Gorge...it's the same, right?!