Medical Update

For a girl who went to to doctor 52 times in her first 6 months at home with us (sometimes I like counting things), we're obviously out of the habit since we've been twice in the past month and I feel like that was a lot.

Yesterday she had her 2 year well child check, where...get this...she has actually gotten onto the percentile chart for height. I mean, it's only the 0.6 percentile, but that's better than 0.0! She grew 4 inches since her 18 month appointment. No wonder I had to buy her some new clothes this fall. And, even though she only gained 2lbs in that time, she's on the percentile chart for weight, too (6th percentile). Of course her head is in the 97th percentile, since I've known since the second she was born than she had a giant head (yeah, it hurt). She's 30.5 inches, and almost 23lbs. If you do that fancy "double your height at age two to get your adult height" thing, Daphne will be about 5 ft tall. Strangely, that is the exact height the geneticist said she would be when he came to visit her in the NICU.

Not to start a vaccination debate here, but we do have Daphne on a delayed vaccine schedule for various reasons, and there are a couple of vaccines we won't be giving her at all. As her doctor was reviewing with us the shots he would recommend for her, he said that since we've waited to vaccinate until after she's two, she only needs a fraction of the shots a baby would need. Don't you think they should tell parents that? That if you wait, you don't have to have nearly as many shots? I know it's not just as black and white as that, because obviously babies can get sick before they are 2, but still, it seems like people should know.

I asked about having blood work done to see if she has any natural immunity to any of the diseases he recommends vaccines for. Know what he said? He said it's very rarely done, but quite possibly in 3 out of the 4 vaccines he recommends, it's not uncommon for folks to be naturally immune. Wouldn't that be great if instead of giving every baby a whole slew of shots (don't even get me STARTED on vaccine ingredients), they would first check to see what was even needed? Again, I know it's not as black and white as that, but he never would have told me about natural immunity except I knew that checking for it is even a possibility. It's sad, really.

(Yes, I totally am that annoying parent/patient who questions everything my doctor tells me. I'm sure he silently curses me after we leave, but what can I say? The library is full of books and I like to read them, and then I learn things, and then I ask questions. I'm OK with that.)

Anyways, moving on...

In December we went to the Cleft Palate Clinic, a little thing our ENT's office puts on once a month. Basically, you sit in an examination room while specialist after specialist cycles through to examine the cleft patient. (That would be Daphne, in case you're new here. Or just forgetful.)

We saw an orthodontist, audiologist, speech therapist, cranio-facial surgeons, geneticist, social worker, and I'm sure I'm missing someone but it's hard to remember. After everyone comes through, they all meet, put together a health care plan and mail it out to you. The only ones we really needed were the surgeons and speech therapist, since Daphne has no hearing problems and her cleft didn't affect her teeth.

We got her follow-up letter right before Christmas, and let me tell you, it was full of great news. She needs no speech therapy, because according to the speech therapist she talks at the level of the 3 year old. I love that her one great skill is being a chatterbox. And her cleft is completely, 100% healed. It's like it was never there. Her ENT doesn't need to see her for 5 years. It's the weirdest thing to have this part of our lives just be...done. It's hard to fathom.

As her pediatrician was going over this information with us yesterday, he described Daphne as 'stellar.' Let me give you the definition of stellar, just in case you need it: (from www.definition.reference.com) 'like a star, as in brilliance, shape, etc.' Brilliant? Yes, I know.

Her parent, on the other hand, not so brilliant. It's 30 degrees out with a wind chill of like -10? Sure, let's go for a walk!l of like -10? Sure, let's go for a walk!"

brilliance, shape, etc.' Billiant, it says? Yes, I think so.



Her parents are brilliant, too. That's why yesterday we were like "hey, it's 30 degrees out with a wind chill of like -10? Sure, let's go for a walk!"

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...

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.

It's All About the Food

Daphne was in the NICU for so long partly because the girl refused to eat. I don't know what her little problem was, but she usually fell dead asleep about 2 minutes into her feeding time. That's why she had the tube in her nose: anytime she didn't finish a feeding they pumped the milk straight to her belly. If her feedings didn't get better but she was otherwise doing well enough to come home, they were considering sending her home with that tube. Meaning David and I would have to learn how to put it into her nose down to her stomach. Horrors! Fortunately she turned into the little porker we knew she truly was and started finishing her bottles like a good girl.















She tried a regular bottle while in the hospital, but because of her cleft she has some sucking issues. She can't get a good suction, which affects her eating and also the ability to be able to hold a pacifier in her mouth without us holding it in for her. She was in love with the paci for awhile, but seems to be growing out of that need. I am happy about that!

Anyways, her bottle is called a Haberman, and it's designed for us to do a little squeezing on the nipple while she's sucking so that she doesn't have to work as hard to get her milk out. The nipple has a slow, medium and fast flow setting so that she doesn't choke. At first she was having issues sucking, swallowing and breathing at the same time, so we used the slow setting. She still has a tendancy to choke a little, so I stick with the medium flow. We hold her upright a bit to give gravity a chance to help the milk go down, and on her side a bit so the milk doesn't go shooting down her throat. Holding her upright also helps her baby heartburn. Being upright 10-15 minutes after a feeding keeps her reflux from acting up, and her projectile vomiting all over my clothes to a minimum. Feeding this girl is truly an art form.





























These bottles cost a whopping $27.95-ish each. Can you believe it?! I've thought about buying more, especially since now she goes through 1 and 1/2 bottles per feeding. (Each bottle holds 80cc's. There are 30cc's in an ounce.) But we kind of have our groove down with washing bottles every couple of feedings, so I don't know. I'm not even sure where you buy them. I think maybe a pharmacy?

Now when you see Daphne's funny looking bottle you know it's story. Thank you Mandy Haberman for your cool bottle invention. Maybe now you could make them in pretty colors? Or make them only $3 each?