Genetics

Yesterday, we had an appointment for the kids with the Genetics department at the Children's Hospital to discuss the kids' puffy foot condition and the possibility that they have Congenital Primary Lymphedema, aka Milroy's Disease.

It takes 4-6 months to get an appointment with Genetics, and I've had to delay ours twice due to (a) broken ankle and (b) work commitments.  But we finally made it.  We ended up showing up apparently an hour late, even though I had confirmed the appointment time twice with them...

The appointment was two parts.  We first spoke to a genetic counselor and a graduate student who took a detailed family history.  I had typed up a document with all the stories relayed to my by my father-in-law of family members who had had some kind of puffy lower extremity and even drawn my own family tree, but it turned out they wanted to draw their own.  The also wanted to take family history from my side of the family, to get a "complete genetic picture," in case there are related conditions that could come into play.  They told us a lot of things we already knew - dominant trait, 50% chance of each child having it, etc. etc.

Then in the second part, the geneticist (an MD) came in and did a physical exam on both of the kids, but mostly Andrew, because he could do more gross motor stuff like chase a bouncy ball around the room.  She was great!  The exam felt to him just like playtime!  After she did a total body examination, she made some notes, then looked me straight in the eye and said, "I think you are right.  I think it's Milroy's."  Validation!

They know which chromosome that the Milroy's mutation resides on 70% of the time (30% of the time it's somewhere else).  So the doc is recommending a blood test to isolate that section of DNA.  Because the mutation can live somewhere else, there's a 30% chance of getting a false negative.  But if we got a negative result, we might take a look at some other conditions it might be.

We aren't entirely sure that we'll do the test yet, as we're not sure what the cost will be.

Milroy's Update

Long overdue - here's an update on the kids' puffy feet, aka Milroy's Disease, aka Congenital Primary Lymphedema.

At the end of 2012, Andrew is 20 months old.  We began decongestive therapy with a wonderful lymphedema therapist in Denver back in May.  His foot was pretty big and tight, and the texture of it was firm.  He responded well to daily manual lymphatic drainage from me and weekly visits to the therapist for more thorough treatment.  We also started wrapping his foot and lower leg with short stretch bandages in the standard lymphedema style (with cotton toe wraps) during the day.  At night he had a lot of trouble sleeping with the wrapping, so we just did it in the daytime.  It seemed to be helping to keep things under control even without night wrapping.  

We made sure to give him lots of time in bare feet too, to make sure his gait and foot sensations continued to develop normally.

Once he got a little older, later in the summer, Andrew was fitted for a Jobst Elvarex day garment (his "special sock") and Solaris Tiny Tribute boots for nighttime wear.  

The Elvarex garment was easier to put on and off, but it didn't hold everything in as tightly as wrapping with short stretch, so we would alternate which technique we used, depending on how busy we were going to be.  The Elvarex garment is also very convenient for travel. 

The Tiny Tributes also don't help as much as the short stretch wrappings at night, but they got him used to wearing something at night.  After the 18 month sleep regression was over, he accepted wearing either at night, and so again, we alternated which technique, depending on circumstances. 

All in all things are going really well.  We are integrating the therapy into our lives, and for a rambunctious toddler, Andrew very willingly accepts the garments.  On the days he gets cranky and doesn't accept them, we don't force the issue and he gets a break.  If he goes for a day or more without wearing garments, his foot puffs back up again.

At the end of 2012, Clara is 6 months old.  She has not yet started serious therapy for her lymphedema.  Her right foot has returned to normal, much the same way Andrew's left one did after birth.  Her left foot (the puffy one) seems to have improved some all on its own with no treatment, and it seems to be not as severe as Andrew's was at this age.  But she also is somewhat affected in the left ankle and lower leg, which is different from Andrew.  In the coming months, we'll start MLD and wrapping with her, to see if we can see some improvement.

The Birth Story of Clara Joy

This is the story of how Clara, my second baby, entered the world, as told by her mama.  She was born at Mountain Midwifery Center, Colorado's only freestanding birth center, in the Tent Room.

The facts: 19 hours of intermittent early labor, 3.5 hours active labor, 6 or so pushes.  Born in the water and a little slow to take her first breath.  7lb 4.5oz, 19-1/4 inches of perfection. World champion breastfeeder.

~~~~~~


Sunday, June 3 (37 weeks, 4 days) - Felt tired, crampy, weird.  Stayed in bed half the day.

Monday, June 4 (37 weeks, 5 days) - Had a prenatal massage.  Cramps in the evening, seeming to come in waves, but no real pattern.  Went away during sleep.

Friday, June 8 (38 weeks, 2 days) - Feeling weird and crampy again.  Not a lot of energy.  We went to Colorado Springs for the weekend, and I got in some pool time which made me feel a lot better!

Saturday, June 9 (38 weeks, 3 days) - The baby dropped!  This made me feel like I had to go to the bathroom all the time, and the waddle increased.  On the other hand, I had more room up top to breathe, and she seemed to be riding better in my pelvis which decreased the pain in my pelvic joints.

38weeks 5day bump, post-dropping - in my favorite shirt :)

Thursday, June 14 (39 weeks, 1 day) - I had fairly strong menstrual-like cramps at night and all morning. At my 39 week appointment, we saw Rachel (a student midwife) and Sarit, and Rachel performed my first internal exam.  I was 1cm dilated, 50% effaced, cervix completely posterior (boo), baby at -1 or -2 station (yay!).  We went to Travis's work group's picnic where I ate BBQ for dinner... turns out there may be a theme here...

Friday, June 15 (39 weeks, 2 days) - I woke up to pee at 5am, and found that I was losing my mucous plug.  I never saw the mucous plug with Andrew, and so like most things labor related, I wondered if I would know it if I saw it.  Answer: yes.  It's pretty obvious.  It was streaked with pink - I don't know if I'd call it bloody show, but some say that any pink at all is bloody show, so there you go.  I was super excited, regardless, because it seemed like things were starting to happen.

I crawled back into bed for my final hour of sleep, when I was hit by a mild-but-real labor contraction.  Anyone who has been in labor probably knows what I mean by "mild but real."  They are so different from Braxton Hicks, or the crampy stuff.  You are like, yep, baby's coming.  No doubt in my mind.  The difference compared to last time was that they were mild enough that I could just wait them out in bed - no need to move, no need to vocalize.  I had a couple of these and was too excited to sleep, so I woke Travis up, knowing that it would probably be our last chance to have a quality cuddle for the foreseeable future.  We cuddled and chatted and timed them - they were 12-15 minutes apart.

I got up and started moving around and soon after the pattern broke down, so that I had had them for about 1.5 hours.  I decided that I'd go into work for at least a little while to tie up my loose ends - I figured it was a good bet that I wouldn't be back on Monday, so I wanted to take the opportunity to wrap things up - one that I didn't really have the first time around.  By the time I got to work I was only having very intermittent mild contractions, but when I had them they were still definitely real ones.    I notified my doula and the birth center that some things were happening, but I didn't want to seem over eager, so I just said, "It might not be today, but probably this weekend."  I lost some more of my mucous plug at 11am.

I continued to have random, intermittent, mild contractions throughout the day, but by the time I went to bed, nothing was happening.

Saturday, June 16 (39 weeks, 3 days) - At 12:30am I woke up to a contraction, similar to the ones I had been feeling during the day.  I got up to pee, glanced out the window at the night weather, then headed back to bed.  No sooner had I laid down than another one hit me, so I busted out the contraction timer app on Travis's iPhone to time them while I attempted to go back to sleep.

Well, it turns out they were 5 minutes apart, and I was having trouble laying still through them, so I decided to go lay on the couch and let Travis get as much sleep as possible.  When the first one hit on the couch, I flew up off of it - no, laying down was not going to work for me.  So I got up and paced around the house breathing through them, trying not to get too excited, waiting for the hour to elapse before I was to call the midwife on call.  I contemplated baking cookies (this is what I do in the romanticized early labor in my head), but that seemed so dang *involved*.  I opted to make an egg sandwich instead, figuring that if this was the real thing (ha! denial!), I'd need some sustenance.

While I was making my eggs, I really started to vocalize through the contractions, leaning on the kitchen counter and swaying my hips.  I was cautious of my volume - I didn't want to wake Mr. Andrew up in the middle of the night!  But soon, I couldn't help it - they were too intense to be quiet.  At the peak of one particularly strong one, my water broke with a pop and a gush all over the kitchen floor.  Relief, though momentary, was instantaneous.  I dreaded that the contractions would get instantly tougher, but they really didn't - they just marched on.  It was 1:30am.

I now figured I'd best call the midwife - not only had my water broken, but it had been about an hour of 5-minutes-apart anyway. Sarit was on call (a good thing I had met her for the first time at my appointment on Thursday!) and I gave her the status.  She asked, "What are your contractions like?"  I responded, "Well, here comes one.  I need to vocalize; you can listen." When I was finished with my mooing/groaning/humming, she said, "Yeah, you need to come in."  I said, "Are you sure?  I came in *way* too early last time." And she was like, "A second time mama who sounds like that?  You *need to come in.*"

So I called up my doula, Jessica B, with "I'm very sorry to wake you, but... I'm having a baby."  And I got Travis up out of bed.  Travis, in turn, got Grandpa Jerry up for final instructions about care for Andrew overnight and to help load the Jeep.  We left the house right about 2am.

Final bump shot - still smiling!

 The ride down to the birth center was much worse than last time.  My contractions were really tough to bear in the car.  I would cling to the handle above the door and gasp, "How can people give birth in the hospital confined to a bed like this???  This is torture!!"  I needed mobility - it was all I could do not to open the door and jump out going 60 mph on US 285.

We finally got there at 2:35a, and met Jessica in the parking lot.  I forced myself to take the stairs this time, knowing that the pelvic motion was exactly what I needed.  I had to stop and handle a contraction in the stairwell, but being on my feet and mobile was SO MUCH BETTER than being in the car!

We arrived in the midst of a veritable maelstrom of babies (it turned out there were like 6 or 7 babies born that weekend at the birth center!).  The log room and the blue room were in use, so we took the tent room.  The tent room had been our first choice room with Andrew, but we ended up in the log room then, and learned to appreciate the benefit of a large amount of space.  So this time around our order of preference was purely size based... and so the tent room was now our third choice.  Ah well, clearly we had liked it at some point.  I was just happy to be there.

We came in and I had several contractions leaning over the bed, which were really tough because the bed was pretty low, so I was pretty bent over.  Everyone was so chatty - hey how are you, how's it going, good to see you, and I'm like, dude, I'm in labor here!  I can't just stand here!  So I headed over by myself and dove into the sling hanging from the ceiling.   This had worked really well with Andrew's labor, and so I knew it was a sure thing.  It was at the right height and allowed me to really keep my hips in motion while having some support.  Jessica came over and massaged my low back.

They wanted to do my internal check "at arrival" - I didn't want them to.  Internal checks had caused me so much pain in my first labor.  The student midwife who was there, Corey, did it, and let me tell you, it was the best cervical check I've ever had.  Gentle and quick - can't argue with that!  I was 5cm, 100% effaced, baby at 0 station.  I was totally excited by this - that was great work already done!  Judging by Andrew's labor, I only had 6-7 hours to go.  The time was 2:50am.  Back to the sling I went for more.

Not long after I went back to the sling, I started to have no breaks.  The contractions would rise up and peak, but when they came down again, there was no release.  There was always this baseline tension in the bottom of my belly (near my cervix, presumably).  Because of this, it was incredibly difficult to relax between contractions, and labor got pretty hard.  I looked up at Jessica, suddenly afraid that I couldn't do this for another 6 hours.  She told me that it wouldn't be another 6 hours, but I didn't know how to believe her.  She suggested I get in the tub.  I initially resisted, again saying that I got in the tub way too early last time.  But once the idea had a chance to really percolate down through the intensity I was feeling, I figured it was probably a good idea to try it.

Before I got in the tub, I wanted to go to the bathroom - I had been feeling like I needed to have a BM.  But I couldn't go.  This was my first indication that baby was close -- maybe a lot closer than I had previously thought. 

In the tub, with doula Jessica

Laboring with Travis, and midwife Corey looking on

All I wanted to do was hold Travis's hands.  Also, I was hot and needed cold washcloths on the back of my neck.

Very, very shortly after I got in the tub, I started having lots of sacral and rectal pressure - a familiar sensation from Andrew's birth... that meant pushing was just around the corner.  I was almost done!  This realization helped me understand that I really wouldn't be doing this that much longer - the finish line was already in sight!  I kept saying "so much pressure."  Corey wanted to know if I felt like I had to push.  "Not yet, but soon."  

My legs were cramping up underneath me as I was on my knees in the tub, and I tried to shake them out behind me.  Jessica leaned into the tub and massaged them for me, which helped.

About two or three contractions later, I felt the baby move down and I really did have the urge to bear down and push.  This was a nearly completely different sensation from Andrew's birth where the pushes rolled through my body like a freight train, with me hanging on for dear life and dangling off the back over the tracks.  Here I felt in control, like I was a conscious player, along with my body, working together to get the baby out.  I leaned forward over the side of the tub, then sat back on my knees, then leaned forward again.

Corey asked me to tell her when I felt burning, by which I knew she meant crowning, but I figured we were still a ways away from that point.  Imagine my surprise when a push or two later, baby's head was right there.  "Burning!  I've got burning!  She's crowning!" Corey reached down to confirm, and I got down to work moving baby's head out.  I could feel the stretching as she moved down and out.  I felt something pop up front, which I thought was me tearing, but I only ended up with a skid mark up there, so I'm not quite sure what it was that I felt.  

But then... I lost the urge to push.  There was no contraction.  I asked how far out she was - "Her head is halfway out," they said.  And I sat back on my heels, pausing, letting myself stretch to get around her.  I reached down behind me and could feel the curves of her face.  It hurt, it burned, but it was so cool to have a moment of respite in the midst of such intensity.  Finally the next contraction came, and I felt the pop of her chin as her head came out and there was a bit of relief.  I waited for the contraction after that to push again, and I swear I felt her push off inside me, like a swimmer pushing off the wall, right before her body came shooting out into the water.

I was ecstatic - what an experience!  I lifted my leg around and reached under me to scoop her up and bring her out of the water and to my chest.  Sarit was moving a loop of cord from around her neck at the same time, and the force of both of us pulling at once broke the umbilical cord! It broke off about 4 inches from Clara's body.  I felt so bad!  I wanted to let it stop pulsing, to let her have all the blood she could gather, like Andrew had had.  But I guess it's just something that happens on occasion, more often during waterbirths, It seems.

But then I realized that she wasn't yet moving.  She was slow to breathe after coming up out of the water.  It was really only a few seconds before she twitched, whimpered, and then cried out in earnest, but it was long enough to ask, "Is she okay?" and then to exclaim, "I love you, I love you, I love you," as if my love alone could make her be all right.  She came to, but they gave her a few puffs from the ventilator bag, just to be safe.  Her first APGAR was a 6, but her second was up to 9.  She was just fine.

Just born.

 She was born at 3:56am, approximately 2 hours after we left home, 1.5 hours after arriving at the birth center, an hour after I was 5cm at my first and only internal exam, and 20 minutes after getting in the tub.  We could have counted the number of contractions I had before getting in the tub, in the tub before pushing, and pushing before birth.  It was just incredibly fast.

We got out of the pool and moved to the bed where I birthed the placenta (easier than I remember from last time).  I was completely high on cloud 9.  Everything was awesome, nothing could bring me down.  I felt SO AMAZING.  Clara rooted around and I helped her latch on... which she did right away like a pro, and I could hear her gulping.  No pain for me, this time!

Hi, mama.

Skin to skin with daddy

"There's milk around here somewhere, right?"

 I was whisked off to my herbal bath where I just relaxed in my post-birth awesomeness.  Clara and Travis went off for the newborn exam.  In answer to one of our really big questions, it looks like Clara also has Milroy's Disease (Primary Congenital Lymphedema) - her left foot was/is quite swollen, and her right one just a little bit.

Squirmy worm on the scale

Daddy trims the cord

For some reason, I love this picture.

Mommy's done with her bath and ready to rejoin the cuddle party.

The first of many daddy-daughter naps

Dressed and ready to go home

Big seat, little girl

We lounged and relaxed (and tried not to fall asleep) for the requisite 4 hours before we could be discharged.  We got home just after 8:30am... about 6.5 hours after we had left.  Andrew (13.5 months old) was just eating his breakfast.  He was a little bewildered, but kind of fascinated by the little thing we brought home.

Meeting big brother Andrew, who was eating his breakfast

Grandma and Grandpa

"Gentle touches"

Andrew got a new shirt too.

Andrew wants to be part of the cuddle party

Andrew got a baby of his own to take care of.

And just like that... we had two kids.

-------------------------------------

Most of my reflections on Clara's birth are framed in my experience of Andrew's birth.  Coming into this birth, I was incredibly fearful that it would be different from last time.  I had a great experience with Andrew's birth, and even though there were things I hoped to tweak about birth the second time around, the devil you know is better than the one you don't.  Little did I know how amazing it would be, and how different.

The most obvious difference was the length of labor.  Contraction to contraction, Andrew's 15 hour labor was easier to handle -- I was even falling asleep between contractions, that's how relaxed I was able to get.  However, though I had a moment where I wondered if I could handle it this time, there's something to be said for getting in, done, and out in a few hours.  It was super intense, yes, but the super intense part only lasted for about 20 minutes (so... four or five contractions?).  In hindsight, it was totally easy.  In the middle of it, I would have never imagined I'd be able to use the word easy.  It's too bad you have no idea how far you have to go - that uncertainty about duration is the one thing that makes birth incredibly difficult.  It's not the pain, it's the question of how long is this pain going to last?

I was very reluctant to try new things to make myself feel better this time.  I knew I wanted/needed to be mobile, and I did a really good job with that.  But Jessica offered to rub my back and I was really hesitant - what if it made it worse?  She suggested I get in the tub - but what if it made it worse or was too early?  I don't know why I had such resistance to trying things.  I feel like I did a lot more experimentation last time.  But then, I had a lot more time for experimentation last time.

Mobility was SO SO key for this labor.  I know I've said it several times, but it bears repeating.  With Andrew I wanted to lay down, sit, be still.  I wanted to change that this time, and I did a lot of walking, hip motion, swaying.  The worst part was being in the car where I was forced to remain in one (reclining) position.  I truly believe that mobility is foundational to natural birth, and any mamas who want to go that route, that's my biggest piece of advice to you - stay on your feet, stay in motion.  Even in the tub, stay in an active position.

I mentioned it in the story, but the pushing part was so amazing this time around.  I felt... not "in control," because you aren't really in control in labor, especially the second stage... but I suppose I felt controlled.  I at least felt participatory.  I felt active.  I felt like I was consciously helping the process.  I did feel a relief, and not a terror, when pushing came.  I did feel that I was able to pause and let myself stretch.  And I could feel everything that was happening, so much so that I could narrate it for the birth attendants while I was laboring in the water: "Okay, her head is out.  I'm going to wait a second.  Okay, here's a contraction.  She's out!"

I did use Hypnobabies as birth preparation again.  Again, I didn't listen to the tracks at all during my labor.  I did use the techniques somewhat, but the technique that was most useful in trying to relax was once again the "horse lips" from Ina May's Guide to Childbirth.  If your lips are relaxed, your other orifices can relax too.  Once again, I can highly recommend Hypnobabies for keeping calm, relaxed, and positive in the weeks leading up to birth, but to be honest, it wasn't that helpful for me during actual labor.

The other fundamental difference was the lack of post-partum hemorrhage.  With Andrew, I bled a lot - my uterus was "lazy" and didn't contract fast enough.  They threw the book of drugs (Pitocin, Cytotec, Methergine) and herbs (Angelica) at me to get it to stop, and it did.  I thought I felt great after that birth, but it was a full four or five weeks until I looked in the mirror and said, "Wow - there I am.  I look like myself."  This time around, the midwives wanted to give me a shot of pitocin prophylactically right after she was born, which I agreed to.  In hindsight, I don't believe that I needed it.  Clara latched on so well, and the afterpains were so strong.  I also had energy in spades after such a short labor.  I practically *skipped* out of the birth center to the jeep, and it was only a couple of days until I was able to look in the mirror and say to my reflection, "Dang, girl!  You look good!"  To this day, (just shy of two weeks later), I have felt fantastic, for nearly my entire post-partum period, both physically and emotionally.  I thought I felt good last time, but this is incredible!  If I wasn't already sold on natural birth, this would totally do it.

I did choose to have the placenta encapsulated this time.  I didn't last time, and since then, my research on the topic says that consuming the placenta may have some awesome benefits (restored energy, hormonal balance, etc.) and has very little downside.  At worst, it seems like it will do nothing.  Unfortunately, I can't tell you how much of a difference it has made, because the lack of hemorrhage and fast, easy birth has made my post-partum experience so much better even without the effects of the placenta.  But it is in the mix.

Another big positive from this birth is that Clara is an amazing breastfeeder.  She had a perfect latch right from the start, and even with the colostrum during her first feeding, I could hear her gulping.  She only lost 4.7% of her weight at the 2 day appointment, and by 9 days post-partum, she had not only re-achieved her birth weight, but shot past it up to 7lb 12oz!  This was so different from Andrew, who had a tongue tie and consequently a bad latch which may have contributed to the hemorrhage, big weight loss, engorgement, and lots of tears on mama's part.  I do think that being a second time nursing mom is so much easier - a little confidence and a little bit of a clue as to how things are supposed to go makes a world of difference.

I'm so thrilled about the way this birth went.  I was afraid it would be different from what I already knew, and it was different... it was even better.  I didn't think it was possible, but it was.  If this was the last time I get to do this, I will have been honored to have such incredible births.  But if I am blessed enough to do this again someday, I will certainly look forward to it!

Links:
Andrew's birth story
Nate's birth story
Birth Reading and Resources
Mountain Midwifery Center
Jessica Bejot, Doula
Misty Rauscher, Placenta Encapsulation

Congenital Primary Lymphedema (Milroy's Disease)

Yesterday was the first step in a long journey.

You may recall that Andrew was born with a puffy foot.  Then he had an MRI to see what it might be.  Then all the docs said that because it didn't seem to bother him, we should just wait and watch it.

In the meantime, Andrew has been walking.  He walks quite well, actually.  He is in all ways a normal, rambunctious toddler. Except his right foot is still puffy.

To recap the story so far, he was examined by two pediatricians and two pediatric orthopedic specialists after birth, he had an MRI at 2.5 months old (including general anesthesia), and everything checked out fine.  Except no one really could say what the swelling was.  The term "lymphedema" was kicked around, but it was explained to me in a general sense: the foot is swollen, and what is making it swell is excess lymph fluid.  Hence, "lymphedema."  All docs recommended a "wait and watch" approach.  Okay.

We just had a follow up appointment with pediatric ortho at Children's Hospital, and they still basically want to wait and watch.  However, I finally looked up lymphedema.  Turns out, the vast vast majority of lymphedema cases are post-op, especially post-cancer treatment, where lymph nodes or vessels were damaged or removed (which is secondary lymphedema).  However, there is a rare (but not THAT rare),  specific condition called congenital primary lymphedema (aka Milroy's Disease), which is basically a malformation of the lymphatic system in some body part, usually an extremity.  It has a very specific treatment plan and the general wisdom is that "watching and waiting" is a BAD approach.  It's congenital because it manifests at birth.  It's primary because it's hereditary (and indeed, there is a history in Travis's family of swelling of random leg parts, from a single ankle to all of both legs from hips to toes).  It occurs in 1 in 6000 babies.

The prognosis is that it's a chronic condition, but with lifelong maintenance (compression socks, etc.) he can maintain a normal foot.  In very, very rare cases it can resolve (Travis had a swollen left foot that resolved within the first 6 months of life, and I just found another kid on a forum whose one foot resolved by 2yrs, although the other is still affected).  But Andrew should have been in therapy, at least getting massage, and possibly wearing compression socks from the beginning.  My instinct was to put him in shoes for the compression, which I did for a while at 3 months, but then our former pediatrician urged me to stop so that "new lymph vessels will develop on their own," which if you know anything about primary lymphedema is so unlikely as to be impossible.  But I listened to the ped and took the shoes off.

Of all of the chronic conditions he could have to deal with, this is pretty easy.  It is not life-threatening.  It doesn't affect his intellect or his emotional development.  It doesn't really affect his physical functionality (he's walking fine!).  There are so many kids who have much worse, scarier things to deal with.  But it is most likely a life long condition.  He may be infection prone due to his malformed lymphatic system, especially in that leg.  If it's not massaged and/or compressed on a regular basis, the foot could become fibrotic and painful.  So this is our life now... it's *his* life now.

Oh yeah, it's an autosomal dominant genetic trait -- there is a 50% chance Baby Girl will have it too.

I spent last week trying to find lymphedema specialists (most of them work with cancer patients) and therapists (ditto) who will take on a pediatric patient, specifically an active toddler.  Which is not what I thought I'd be doing ~3 weeks before giving birth.  Two therapists I called told me outright they don't work with kids.  (I'm like, there is no such thing as a pediatric lymphedema therapist, so where to you suggest I go?)  But the third call was the charm, and we found a therapist who would take a look.  It only takes one!

Yesterday, we had our first session with the therapist.   The lady that we are seeing is FANTASTIC.  She appears to be the most highly trained/credentialed/experienced LT in the Denver metro, and she didn't hesitate to see a toddler.

After I related the whole story and family history to her, she showed me the massage techniques to help his lymph nodes drain.  She suspects that, rather than having malformed or missing lymph vessels in his ankle, it's actually the major lymph nodes in his groin area that are having trouble draining.  She thinks if we can help those drain more effectively, along with the armpit ones and the belly button ones (I didn't realize there was a cluster at your belly button) that we will see the foot go down some even with no compression.

Initially she wanted to not do compression yet, but after examining his foot, she noted what I have been noting over the past couple months or so - that his foot was getting harder.  Because of this, she decided that we should meet next week (barring a new baby) and she will show me how to wrap it then.  She is highly optimistic that we will reverse the hardening, and that he can have a normal size foot, with help.

The massage is pretty easy to do, and it's a light touch, since lymph nodes and vessels are right under the skin.  Andrew seemed to enjoy it and relax with it.  He really loves touch (hugs, back rubs, cuddles, wrestling), so I'm not surprised that he takes to it well.  I did it before we put on his pajamas for bed and then again when he woke up this morning and I changed his diaper.  Ideally we'll do the massage 2-3 times a day.

Also, after some phone tag, I was finally able to reconnect with the PA at my pediatrician, who we have been seeing at well child visits.  She was shocked at the non-answer that we got from Children's Hospital Ortho, and committed to helping me find a medical doctor (as opposed to a therapist) who is familiar with the condition and perhaps better suited to do the follow up visits.  She was going to call CH Ortho too, because she knows the doc we saw and wonders why there was such a disconnect in the level of care/detail of answer we received.  The therapist was already saying she wanted to call up our ped to coordinate care, and the PA at the ped was happy we were starting the therapy and is now prepared to speak with the therapist.  Everybody's on board - we are assembling a team.

So, I'm really happy with this.  It's amazing what a relief it is to (a) talk to someone who actually knows what they are talking about and (b) have a plan of action.  I am so confident that with the proper care and maintenance, Andrew is going to have a normal quality of life, and I feel like we are now on a good path.  And I feel much better that the PA at the ped validated my frustration and awkwardness with the ortho docs.  It's amazing how having someone say, "Yeah I agree, that doesn't sound right.," makes you feel not so crazy.

Lessons: Be your own advocate, and do your own research.  The doctor isn't your master and commander, he's merely someone on your team - don't turn your brain off.  Get second opinions.  Trust your instincts.  Be thankful everyday for your awesome little boy.

Funny things are everywhere

I've been reading a lot of "One Fish, Two Fish, Red Fish, Blue Fish" lately.

At three months old, Andrew doesn't get a doctor's appointment, so I whipped out the tape measure and estimated him at 25 inches long.  Also, we missed breastfeeding support group last week, so I interpolated this week's weight with the previous week's to get a 3-month weight of 15lbs 1oz.  It appears his 12 oz/week (nearly double the "normal" growth rate) has finally slowed to a snail's-paced 6.7 oz/week.  I guess he won't be a 747 by the time he's three, after all.

His height and weight put him at or around the 71st percentile for boys.  Rockin'!

The Nelsons came over last weekend, and Andrew got some quality Tara-time.

The Nelson boys enjoyed the cradle.

Andrew is getting really good at holding up his head.  He can sit up on a lap pretty well, and can be propped up on a pillow or in a chair.  So I got him a seat for supported sitters.  He can only sit in it for about 5 minutes before his neck and back get tired, but he does a great job.  Won't be long until he can sit there for a long time!

This is his "look of concentration."  New toys and all.

"What?"

He's getting to be a pro at the bottle.  I finally realized that he was getting frustrated because we were still giving him the ultra-slow flow newborn nipples!  A quick trip to BRU later, and he's cruising along with a nipple upgrade.  Much happier.

Soon he'll hold it by himself!

Tummy time is much happier lately, especially with the Boppy as a prop.  He actually plays with the toys while he's down there, which is a new development.  He likes picking the ball up - it rattles.

So this is his new favorite thing.  He sits in the swing (or bouncy chair or car seat) and you throw a blanket on top of him.  He giggles and fluffs it around with his hands, then he sucks on it, rubs it on his cheek, nestles into it, talks to it... This provides more entertainment than practically anything else we have.  He's also talking to the animals on the mobile a lot now, which he's doing in this picture as well.

Since it appears that Travis's puffy foot resolved when his mom put him in shoes (for unrelated reasons), I decided to get Andrew a zoogie pair and see what happens.  The compression of the shoes deflates his foot quite nicely, but it always fills up again when the shoe is off for some period of time.  Hopefully we can convince the foot that it likes to be in its deflated state eventually.

And they're cute too.

Oh, the shoes remind me that he likes to lock his knees when you pull him up, so instead of pulling him up to a seated position, you pull him up to standing.  He stands for longer and longer times.  He does this barefoot quite happily, but the shoes give him a whole new level of stability.  That's about the only thing he likes about the shoes.  Most of the time he's complaining that he wants them off.

We continue to sleep long stretches at night, but we haven't yet settled down into a new routine.

This n That

Puffy foot update: after reading the MRI, Doc says that the foot is simply filled with fluid, probably lymphatic.  There are no tumors, growths, or other weirdness.  All blood vessels look good.  They are confident that it's not going to hinder the development of the foot.  They are happy to "wait and see" if it resolves on its own before taking action.  Great news!

Grandma Joyce and Grandpa Mike were visiting this long weekend and one activity we did was to drive to the top of Mt. Evans.  Travis hopped out at Summit Lake (around 12,800') for a short hike to bag Mt. Spalding and then walk the ridge to Mt. Evans.  I got nervous about my stamina and the windy conditions and being away from Andrew, so I bailed on the hike.  I'm now even more motivated to get in shape and get some confidence back.

On top of Mt. Spalding

At the summit of Mt. Evans, we all climbed up the summit pile to the top.  I'm so proud of my parents for getting out there and braving the altitude.  Andrew came too, in the Ergo, for his first excursion above 14,000 ft.

Mt. Evans Summit: 14,264'

All bundled up for the windy weather

On Sunday evening, Grandma and Grandpa babysat Andrew so Mom and Dad could go on a date (putt-putt and BBQ).  Grandpa worked hard to give a fussy Andrew his bottle.  He didn't like it too much, but they got it done:

On the one hand, I'm glad that he prefers nursing to the bottle.  On the other hand, we definitely need to practice more with the bottle in preparation for going back to work.

Puffy foot: MRI at Children's

I have mentioned in passing before that Andrew was born with a puffy right foot.  He came out this way, which freaked the midwives out a little bit.  His foot hasn't really changed since then.  He's been examined by 4 doctors, including a pediatric orthopedic specialist, and many nurses who all have said the same thing: It has great circulation, all the proper reflexes are in place, the legs and footpads are symmetric, it doesn't seem to cause him pain, and he is able to stand on it/kick with it equally with the left foot.  We're not sure what is wrong, exactly, so we should just wait to see if it resolves on its own or if he grows out of it.

Our pediatrician originally surmised that it had fluid in there, as most swollen things do, then the ortho guy suggested that it was vascular - either blood vessels or lymphatic vessels that grew extras for whatever reason - and now we're back to thinking that it's fluid again.

Fascinatingly, it appears that Travis also had a puffy foot when he was born - his left.  His dad thought he remembered this, but we were able to confirm it in Ohio last week when we uncovered Travis's baby books and albums.  It turns out that Travis's mom wrote in a day planner *every single day for Travis's first four years of life.*  (Makes me feel like a slacker for keeping a mere blog.)  So here are a few entries from 1978 with regard to the foot:

Feb 6, 1978 (just over two months old): "We will go to Doctor's Hospital to get X-Rays taken of his left foot."

Feb 8: They saw the specialist, who recommended one of those orthopedic braces we all had with the bar between the shoes.  (This didn't have much to do with the foot, more with the "legs turning out."

Feb 18: They got the brace.  "Travis did good with his new shoes and bar on.  He did keep kicking them off - especially the left foot that is still swollen from birth."

March 6 (just over 3 months): They saw the specialist again.  "The swelling on his left foot is practically gone."

So Travis's seems to have resolved on its own.  Even more interesting, now we are hearing that there are family stories of a great-great-grandfather who had puffy ankles his whole life and a great uncle who had disproportionately large legs.  It's fascinating - this seems to be a genetic, inherited thing.

At any rate, Andrew's pediatrician decided it was time to take a look in there and see what's going on.  And because it appears to be a soft tissue thing, MRI was the tool of choice.  And because one needs to hold perfectly still for an MRI, and we have a squirmy worm, he had to be under general anesthesia for the procedure.

So yesterday, we, along with Grandma Joyce, headed over to The Children's Hospital for an MRI.

First they took his weight:

Then they took his history:

Took his blood pressure on his leg:

But he was so squirmy they needed to take it again on his arm:

 Then his pulse ox from his toe:

Then he flirted with Nurse Holly:

We met the anesthesiologist:

 He had to wait to eat because of the anesthesia, so when he started to get hungry, Grandma rocked and put him to sleep:

Then it was time to take him away.... and Mommy cried a little.  (God help me if he ever needs to have a serious procedure or surgery done.)

Grandma and I poked around the first floor of the hospital.  As hospitals go, Children's is a pretty fun place to hang out.  Then we sat in the cafeteria to wait for our pager to go off that he was in recovery.

He was still sleeping on the gurney when we got back, with his chin propped up and a nasal cannula helping him out with some oxygen:

This was the little face mask they used to give him nitrous - enough to relax him to get in the IV with the main anesthesia:

He slowly woke up and tried to nurse, though he was a little drunk and uncoordinated:

After a quick diaper change, we were good to go.

On the way home, as he woke up more, he realized he was super hungry, so Grandma soothed him by letting him give her finger a hickey until we stopped for a nursing break.  We finally made it home in spite of a monsoon that hit during rush hour and having to drive all the way across town.

Andrew was a champ and had a good evening and a good night in spite of the traumatic day.  We'll get the results of the scan soon...