Just a drop by to thank everyone for all the support and messages. They've all meant so much to me and our family. Also, Juniper wanted to say hi.


When shots are the least of my worries

Yesterday, Juniper had her two month well baby visit.  I'm not sure what I was expecting from the pediatrician since doctors really don't know much about lymphedema, but I ended up getting my feelings a little hurt bent out of shape.  
When Juniper was a newborn, I always had black and white Montessori cards in my diaper bag so that I could encourage her to 'practice her attention.'  Now all that's in my diaper bag is 15 pounds of cloth diapers and larabar wrappers, so there is not so much of the 'attention practicing' happening in the peach-walled office for 45 freaking minutes.  This is Juniper saying "Where is my Hello Animals book Mom? And why does Dad alway have that black box attached to his hand?  Hi Dad! Do you have my Hello Animals book?  Do you know why there aren't any pictures in here or anything that is remotely interesting for me to look at?  Why? Why?"

I should back up a little and explain that primary lymphedema is the result of a gene mutation, but there are a couple of ways that this mutation presents itself.  The first is called Milroy's disease, which is basically the name given to the gene mutation that causes just the lymphedema.  The second is called Noonan syndrome which is where the gene mutation causes lymphedema along with a host of other health and learning issues.  I know that every parent believes that her child is brilliant, and I am no exception to that rule, but I know in my heart that there is nothing seriously wrong with her beyond the lymphedema.  In reality, I know that Juniper may not be the smartest kid in her class, but kids that are affected by lymphedema, from what I have learned through some online parent groups, are "normal" in every other way.  Noonan syndrome is a whole other thing entirely because lymphedema is basically just one marker of the disorder which consists of many other problems.  
The fact that doctors don't know too much about lymphedema is, in my opinion, probably due to the western model of medicine not liking things that are not 100% scientifically reasoned.  I mean, a quarter of the treatment of lymphedema is massage; not exactly your standard western treatment of care.  Lymphedema doesn't fit in a neat little box that can be fixed the same way, each time, for each person.  It is different for everyone and can change based on the weather, on hormones, on altitude, and just because.  
At San Onofre.  Dad surfed, Mom didn't because a) I forgot my beach bag with my bathing suit at home (yes, I forgot my beach bag when the plan was for us to go to the beach) and b) there was actually some swell in the water and after about 11 months of not surfing I am a wuss.  
So when our pediatrician brought up Noonan syndrome, I prickled.  Then when she told us that Juniper's head was on the small side , and that she'd check and see if that was something related to the lymphedema, I worried. (Any of you that know Daniel know that he has what I affectionately refer to as a pinhead.  My whole pregnancy I hoped that baby would inherit D's tiny head to make my life easier.  Obviously, J has her Daddy's little head and I need to get mine on straight instead of worrying about baby growth charts.  Hindsight, friends.)  And when, at the end of the appointment, she said something along the lines of Juniper 'doing as much as she is able to do.' I got upset.  I didn't cry in the office or anything, but I let it get to me.  D says I need to get a thicker skin because people will probably say much worse about and to Juniper her whole life.  I know he's right, but man is that mama bear instinct strong, I just want to freak out on anyone who thinks that my baby isn't just like every other kid (or at anyone who thinks my baby is just like every other kid).  
This is what practicing attention looks like.  She's talking to her munari mobile

And I thought that her getting a shot would be the worst part of the visit.  


She's Crafty

For starters, how did we go from this, which I have titled "Galloshes Socks:"
Juniper at about a week old
to this in two months? 
Juniper at two months old
That onesie in the top photo doesn't even fit anymore.  The galloshes socks are too tight on her lymphedema leg!

Anyway, It's the little, stupid things that keep getting me with this whole lymphedema thing.  Like, how am I supposed to keep her little feet warm when she can't wear any baby socks?*  I guess she could, in theory, wear socks, but since she can't have anything tight on her affected leg, that makes wearing socks that might actually have hope of staying on her feet kind of difficult.  It's also summer and the sock thing is not super important all the time right now, but when Daniel and I go on walks and her feet are dangling out in the carrier, I want something on her feet to protect her from the sun and from bugs.  I'm pretty much terrified about her getting a bug bite on her bad leg (I need to figure out some other way to word that since it's not like I'm sending her left leg to detention) since that could make her leg swell even more or cause infection.

I tried putting some cute fleece booties on her that we got as a gift, but they're way big and there is something wrong about wearing fleece booties in July on a sunny walk.  Thus I was forced to actually use some of my insane fabric stash (I have a problem with collecting designer fabric) to make some cuteness.  Two birds, one stone I tell you.
Notice that the cutie booties are not made from any of this recently purchased fabric.  Hmph.
I ordered two sewing for baby books when I was pregnant, and the only thing I'd thus far made from them was a nursing shirt for me; whoops.  It was time.  I decided to make the cutie booties from Amy Butler's Little Stitches for Little Ones.  I picked these instead of the booties in Anna Maria Horner's Handmade Beginnings because the cutie booties have no elastic, and because my friend had some for her son and they seemed to work well.  I've since read about using a seam ripper to take the elastic threads out of the cuff of socks so that they don't press in on the lymphedema calf/ankle, and I do plan on doing that to Juniper's socks in the future.  However, if I'd read about that trick a few days earlier the world would be lacking the following cuteness, and that would be sad indeed.  

Let me just say that while I've been sewing clothes since high school, these booties kind of intimidated me.  They're small, and full of curved pieces, and, well, I wanted them to be of better, more finished, quality than the stuff I throw together for myself.  Friends, sewing baby stuff is awesome.  It's tiny, so it is fast.  Cutting the pieces and ironing everything took longer than the sewing.  I want to make like ten pairs.  Remarkably, they actually stay on Juniper's feet, and since they adjust, they fit on chicken foot and puffy foot equally well.

I apologize for the blurriness of this photo, Juniper likes her booties so much that she insisted on bouncing non-stop
I think Juniper likes them, but she also seems to like eating the exact same thing every two hours every.single.day, so perhaps she is not the best judge.  But, I like them and think they are pretty freaking cute.  
Fabric is Dan Stiles for Birch Organics on the outside, Riley Blake Alphabet Soup on the inside.

*You have to be careful not to put anything on the affected leg that  makes an indentation and therefore tourniquet effect.  That would keep the lymph fluid down in the leg and possibly cause worse swelling.  


Blink of an Eye

When Juniper was three weeks old, we noticed that her foot was a little swollen one afternoon when we were hanging out with friends on our deck. She still had some major chicken legs going on at the time, so her puffy little foot seemed incredibly puffy in comparison to the other, chicken-like foot.  We took Juniper to the doctor a few days later, and the pediatrician said that it was probably an ant bite. We all breathed a sigh of relief and went about our lives, which for Juniper meant that she kept eating, pooping, sleeping and cooing in steady rotation, and for us meant that we kept trying to respond to the needs of this little human as best we could while trying to catch her pees and poops in the potty a la elimination communication, and battling the worst diaper rash ever.

A week later, the swelling had gotten worse and we went back to the doctor. This time, the doctor called the local children's hospital, and after some consultation told us that he thought it was something called lymphedema, but that he wanted to have an MRI and an ultrasound done to be sure. Daniel and I went home and looked lymphedema up on the Internet, despite knowing that this would probably completely freak us out, which it did and I do not advise to anyone who may be in our situation, and found that while there is a lot of information about lymphedema in adult cancer survivors, there is little about primary lymphedema which affects children, and even less about it in babies as young as Juniper. What we did learn was that it is a permanent condition and could look really horrifying if left untreated. We were totally freaked out. I tried to find anything else it could possibly be other than lymphedema. She had a bad diaper rash, could it be infected, and that's what was causing the swelling? Was it a reaction to the vitamin K shot at birth (I did find that this does happen and had myself fully convinced that this is what was going on with J for about two hours until I moved on to something else)? An infected lymph node? I wanted so badly for it to be something we could fix. My mind raced with all the things I wondered if she would never do, and with all the things I feared we'd never be able to do as a family.

Everything looked normal at the ultrasound and again at the MRI. I held out hope that maybe it was something else, maybe it would just go away and my perfect baby would be perfect again. We met with our occupational therapist when Juniper was 5 1/2 weeks old for an eval. She thought it looked like textbook lymphedema. I tried not to cry. As we talked with her she told us that she had spoken with her mentor about what to tell parents of a baby with lymphedema. Her mentor told her to tell us: "treat her like a normal kid." Then I did cry. Our OT gave us so much good information and made us realize that while the lymphedema is something we need to manage, we don't need to let it define our lives.

Basically, lymphedema happens when the lymph system is damaged. In adults this is usually due to either radiation therapy or to the removal of lymph nodes as part of the cancer treatment process. In kids and babies it is due to the lymph system not developing properly in utero. The lymph system could be underdeveloped, the nodes could be too small or missing, the vessels could be too narrow, or a combination of all these factors could be at play. As a result, lymphatic fluid builds up under the skin. If this fluid is allowed to stay there, serious complications can occur like infection and severe distortion of the affected area. The treatment involves massage of the area to mimic the natural action of the lymph system and use of compression garments to keep the fluid from building up again. We have to be extra careful with Juniper's skin because that extra fluid makes the area much more susceptible to infection. Thankfully, lymphedema is not painful and, as long as its kept under control, doesn't limit mobility. For six weeks we will see our OT three times a week, and when Juniper is about six months old we will start wrapping her leg at night, and when she is about a year old, she will be fit for compression garments to wear during the day.

Sometimes I am still really angry that this happened to my baby. In some ways, I feel robbed of having a normal "fourth trimester" to spend with her, I mean I am supposed to be carrying my angelic baby around in a sling 24/7 whilst picking flowers with my hair flowing in the breeze. I wonder what I did to make this happen to her. Other days, I feel thankful that this is all that is wrong and know that it could be far worse. My baby is growing, she is super-strong, and I love her more than the world. I try not to let the diagnosis cloud my interactions with her, because all I want her to see in my eyes is how much I love her and how special she is to me, not how sad I am that there is something wrong. Kind of hard to do when I am sad, but I figure it's good practice for when she's older and I want to laugh when she does something bad but instead I need to reprimand her.  Learning to hide my emotions from my daughter at an early age, I'm a precocious parent.  Seriously though, some days it feels like the end of the world, and others it kind of feels like no big deal, and we want her to feel like it's no big deal even though right now it feels like all of our plans and hopes got turned all around.   



Me at 36 weeks

When I was pregnant with Juniper, I didn't have fantasies about what life with a baby would be like.  I knew that life with a baby would be hard.  I did have fantasies about what life as a family would be like once that baby got older.  I imagined that we'd all go hiking and camping, and to the beach to go surfing together.  

When Juniper was three weeks old, we found out that she had a birth defect called lymphedema, and all my fantasies collapsed.  There was/is little information about primary lymphedema    in babies available, and Daniel and I did not (and still don't) know what to expect.  I started this blog as a way to track our life as a family and to maybe help someone else whose baby gets this diagnosis and doesn't know what to do.

This blog won't just be about Juniper's diagnosis though, rather I want it to be about our life: what we do, what's the same as before, what's different, the crafts I do, the beer Daniel brews, and everything in between.  I hope that in a year it will be a place where people newly in our situation can come and see that your baby will be fine even with the lymphedema and that your lives can carry on.