Pippa, Rowan, and a little bit of other stuff...

Rowan had her 9 month appointment yesterday, and everything looks great. We were able to reduce her acid reflux meds a bit, and her tongue/mouth isn't causing her any speech problems so far (yay). Here are her new numbers:

24 lbs 2 oz, 95th percentile -- the fact that she's not well over 25 lbs would surprise anyone who's picked her up lately. We can't explain it, but we're thrilled she's back on the charts w/ her weight.

28.5 inches, 75th percentile -- I've got some high six and seven footers in the family, and as I said to one of them the other day, I completely blame them for these huge babies we've got.

45 cm head circumference, 75th percentile -- again, after trying to put hats on her melon head I'm astonished it's this low.

Last night Rowan started to 'barrel roll'. I think she's given up on crawling for now, so when she's lying down she just rolls and rolls to get somewhere. We'll try to get it on video soon because it's pretty funny. Often, Pippa is in her path, and since they're only about 3 pounds apart Pippa gets pretty ticked when Rowan tries to roll over her. I'm not sure we'll be able to call her the 'little' sister much longer.








And now for videos...

Rowan catching a ball -- unfortunately this one is sideways.



Rowan doing a not-great job of standing, clapping, and sticking her tongue out, and Pippa generally interfering.



James carrying Rowan and chasing Pippa around and around. If you listen carefully you can hear both girls hysterically laughing. And then Pippa asking to be chased again.





Pippa imitating an opera singer. I love how she sings the bass and soprano parts.



Pippa went through a phase where she was imitating bugs. She'd only do the grasshopper on film.

Labels: pippa, rowan

Here are a bunch of photos from the last week or so:

Labels: pippa, rowan

So Rowan had her first Halloween and Pippa had her first Halloween where she vaguely got what was going on around her. We visited a few neighbors-- she really liked knocking on their doors: the entire time we were walking up the driveways, she was saying "knock-knock-knock-knock..." until we made it to the door where she would (very gently) knock on the door.

Labels: pippa, rowan

Yesterday morning they took Rowan off the breathing machine, and removed her breathing tube. This was the criteria for releasing her from the IC -- unfortunately they didn't have a room for her on the pediatric ward until yesterday afternoon, but by 5:00 pm we were all moved in. It's great -- they have beds for us, a fridge, bathroom w/ shower, and we can hold her whenever we want. However, they were only giving her tylenol for pain, and as she has a combination of things wrong (tongue stitched up like Frankenstein, thrush, diaper rash, raw throat and nose from breathing and feeding tubes, etc) this was simply not cutting it. So, she had a 12 hour hysterical crying jag with a total of one hour of downtime (split into 15 minute chunks). Needless to say James and I were on the edge of our emotional and physical brink, as were she and the nurses and, we're sure, the other patients on the ward who had to listen to it. The climax came when she ripped her own feeding tube out (these things are LONG going from the nose down to the stomach) and then I had to help the nurse get it back in by holding her down because she kept trying to re-remove it. She has quite a reputation on the 5th floor as she pulled her own IV out last week -- a very difficult thing for an infant to do it turns out. Messy, too. Ahh, these are the memories we'll fondly hold onto. They finally prescribed oxycodone -- the first dose didn't work; they increased the frequency, and it didn't work; they doubled the dosage and it finally took. She's been mostly sleeping ever since and James and I got some much-needed rest. They're going to keep her drugged up for a while so she can heal from the hysteria.

So, now we're waiting for the speech/OT folks to come make sure she can swallow and then we can start her on the bottle. They'll probably not come until sometime tomorrow. After she's proven she can get enough calories into her thru bottle feeding, and the swelling in her tongue goes down, and her pain gets under control, they'll happily discharge the lot of us. I'm thinking Tuesday at the earliest, more likely Wednesday but hopefully not later! I'm currently camped out in Rowan's room, James is going back and forth between home and the hospital a couple of times a day to try and bring some normalcy to Pippa's life, and my mom (the saint) is still taking care of Pippa.

Labels: rowan

So, Monday morning I started having contractions about 15 minutes apart. They continued for several hours, and after talking with the nurses at my obgyn practice, they sent me into the hospital for monitoring. We stayed there for a couple of hours and they determined that Rowan was doing fine, and I wasn't in labor, so sent they sent us all home. We were extremely relieved because it was one of two days Rowan's surgeon was out of town and unavailable.

Tuesday the contractions continued, 15 minutes apart still, and after talking to the nurses again they had me come in again to be monitored. After an hour they determined that, again, Rowan was fine and I wasn't in labor and sent us home. They also confirmed that even if we don't make it to the planned C-section (the date's not set yet, but will be soon) they can get Rowan's surgeon to the hospital in time to take care of the cyst.

Today, James stayed home for part of the day to let me keep my feet up, and the contractions have slowed down to one an hour... unless I get up. It's gonna be a long week, but we'll keep everyone updated. Hopefully this just goes away and we make it to the 38th week!

Labels: rowan

So yesterday we had a meeting with the Pediatric ENT Surgeon who will be working on Rowan the moment she is born.

During the consult we reviewed the results of a fetal MRI that Emily had the day before, and talked over the different scenarios, good and bad, that might play out during and after delivery.

The news was generally quite good: The cyst in Rowan's mouth is, as was indicated on the ultrasound, just one large cyst, rather than a number of smaller cysts, and it appears to be liquid filled. All this tends to support the initial differential diagnosis that the cyst is a ranula. (you can read our original post on the diagnosis here.)

IF all this is accurate, things should go pretty smoothly-- they should be able to drain the cyst immediately to establish an airway, then take Rowan to surgery to remove some of the extra tissue. Recovery could be quite quick and she could be released from the NICU within a day or two.

This is the best guess scenario, and it is obviously the scenario we are hoping for.

However, there are a number of things that could alter this. One possibility is that the cyst could have caused developmental problems for her tongue, which may result in short or long term speech or swallowing issues. We won't know anything about this possibility until the doctors are able to see the tongue without the cyst in the way. Another possibility is that to effectively establish an airway (if for instance the cyst doesn't drain they way they hope it will) they might need to perform a tracheotomy-- the major problem with this, is that tracheotomy openings made in infants can't be allowed to close until they are fully a year old as the scar tissue could impede their breathing, so if this happens we'll be dealing with trach tubes for a year or so. Perhaps the worst possibility, though, is that the cyst is not a ranula, but might be one of any number of worse options (although the ultrasounds and MRI don't show any indications that this might be the case). If that happens, all bets are off, and our lives could get very complicated for some time.

In any event, we were encouraged, but also sobered, by the meeting yesterday. The doctor seems amazingly competent, and is recognized in the field for this sort of work, we're at one of the best hospitals for dealing with this sort of thing (some of the people we overheard in the waiting room had driven in from such distances that they needed to stay in a hotel the night before). And we have every indication that our best case scenarios are also the likeliest. It is difficult, though, to think about the other possibilities, but also good to have an idea of what they might entail so we can be prepared for other eventualities.

All in all, we are expecting and hoping for the best.

Labels: rowan

We just joined this service called UPromise that lets us save for Pippa's college education. It hooks our credit cards, grocery cards, pharmacy cards, and online purchases thru their website (they've got lots of coupons and deals for online shopping in every type of category), and when we make 'qualifying' purchases the brand company adds some money to our 529 account for Pippa's college fund. The cool thing is friends and family can hook all of their cards and purchases to our account, too. If you're interested in sending Pippa to college (listen, you gotta plan ahead these days), send me an email at emily dot jacksonsanborn at gmail dot com (that email address is all spelled out so those darned spammers don't get me, but you know what an email address should look like). Then I'll send you an email invite that'll hook you up to Pippa's account (which will be shared by Pippa and Rowan once she makes her grand appearance). Not to rob our kids of savings, but in the interest of full disclosure, for those of you who are planning on having kids, you can set up an account for your future kids, too, at www.upromise.com.

Labels: pippa, rowan

We had our follow-up sonogram yesterday, and the news was pretty good. The cyst is still there, but it hasn't grown in proportion to her head, and the amniotic fluid level is fine. They caught pictures of her swallowing so it isn't impeding that function yet, there is still no vascular activity, and it's "floppy" (apparently, this is a good thing). The rest of her is looking normal. So the current plan is to monitor her every two weeks for the rest of the pregnancy -- the first appointment of each month will be a quickie sonogram to do a visual check on the size of the growth and measure amniotic fluid levels, with a follow-up appointment with one of my doctors to check on the pregnancy in general; the second appointment of each month would be a more in-depth sonogram to measure the growth of the cyst, swallowing, fluid levels, etc. I'm glad they're monitoring it so closely even though it's more of a pain to get in for that many appointments.

Pippa seems to be adding other words to her vocabulary. Today "bird" ("buh") made an appearance, and yesterday she started saying "up" which she says backwards "pu". We'll see if they stick around.

Labels: pippa, rowan

Now that we know Finale is a girl, and with all that's been happening, we felt like doing something proactive. We'd been tossing around names for a while, and we just kept coming back to Rowan (which had been on our 'name list' when we were picking Pippa's names). We both really liked it, then started looking into the meaning and some of the lore surrounding the Rowan Tree and it just seemed to fit. Here are just a few of the things that seemed to make it work:

• The rowan is the tree most often cited as the "tree of life"-- the image engraved on our wedding rings
• Rowans are traditionally seen as magically protective-- something this little kid could use right about now
• The rowan tree in 'Celtic Astrology' is the symbol for early to mid-October, when she'll be making her appearance in the world
• In Greek mythology, the rowan was guarded by a dragon-- James used to collect dragons as a kid and has a dragon tattoo on his shoulder
• And silliest of all-- there's an online quiz "What Tree Are You", and James scored as a rowan tree and I tied between a rowan and an ash. Take the quiz and see what you are :)
  

So anyway with all that and, of course, the fact that we like it, we've decided one of her names will be Rowan-- Still not sure if it will be her first or middle name, and definitely not sure what other name we might pair with it, but that's what we're calling her now.

Here is a 3d ultrasound image of Rowan from last Monday's scan:

Labels: rowan

So we just got off the phone with our Doctor-- They had their case review with the entire practice this morning, and the general consensus is that this is a 'ranula' which is a cyst formed by an obstructed salivary gland under the tongue. There is an interesting synopsis of this condition here.

Overall, this is a pretty positive diagnosis, as these aren't typically associated with any other kind of birth defects or syndromes, and the treatment can be very successful. They also reiterated that the facial development (nose, lip, palate, jaw, etc.) was all just fine.

Because this is a 'differential diagnosis' (medical speak for a best guess when weighing all the options) things could change radically. However, if this indeed proves to be the correct diagnosis, we will need to monitor the size of the cyst as all the treatment options will hinge on how it behaves. Treatment could include regularly draining off amniotic fluid if the cyst grows large enough to interfere with swallowing, surgeries at birth (intubation to allow breathing if it interferes w/ that, and surgery to remove the cyst immediately or within a couple days after birth), and if it gets really bad then in-utero surgery to try and reduce the size of the cyst. Of course, as we get more info other treatment options might be considered.

In any event, this was about the most positive diagnosis we could have at this point, and now we just have to monitor things to see how the situation will unfold.

Labels: rowan

So we had our 18 week detailed anatomy scan and Finale is a girl! Great news when it comes to reusing clothes, toys, etc...

The examination did turn up something somewhat concerning: there is a fluid-filled cyst inside Finale's mouth under the tongue, large enough to push her tongue to the roof of her mouth. What this means or indicates though, the doctors really don't know at this point. This type of growth seems to be very rare (no one in the practice has had any experience with it), and there is no good way right now to know what the longterm prognosis will be. If the cyst continues to grow it could interfere with the baby's ability to swallow the amniotic fluid, and thus regulate her fluids, which might require prenatal procedures such as drawing off some amniotic fluid, or possibly an operation in utero (though this is doubtful). If it interferes with swallowing, it could also possibly interfere with breathing, and might require immediate surgery when she's born, with possible follow-up surgeries. There is also a chance that it will stay the same size and just need a relatively minor procedure post birth. Obviously we're hoping for the latter option. We'll be meeting with the pediatric surgical team soon to discuss the birth and subsequent scenarios. This does mean Emily will almost definitely be having a planned C-section because if the mass interferes with breathing they want Finale out quickly so they can immediately perform surgery.

In any event, our doctors' practice has a case review this Friday and they'll be focusing on Finale's case and will pool information, expertise, and opinions. We will be having a follow-up ultrasound in two weeks and again in a month to see how this progresses, and hopefully we'll know a lot more then.

To end on a truly positive note, Finale's tracking right on target for size and development; hands feet, heart, brain, spine, etc are all just fine. Even more important, the lip, nose and palate are all well formed, and the rest of the mouth area seems to be developing fine, too. We'll post pictures from the sonogram soon.

Labels: rowan

So at Emily's regular checkup this week, they pulled out the small ultrasound machine and took a look-- Everything is going great. They redated the due date, again, it's now back to the original due date of October 18.

For what it's worth, here is the ultrasound image that they printed off. Normally I'm pretty good at figuring out what everything is in these, but I'm at a loss with most of this one. The circular thing is the yolk sack-- I'm not even sure which end is the head....

Labels: rowan

Good news -- we're expecting our second child in mid-October. We are super excited. They won't be Irish twins, but they will be close -- 17 months apart. We've nicknamed this baby "Finale" because it will be the last. Whoever says "3 is the new 2" is out of their minds. I had a sonogram last week and saw the heartbeat going strong -- Finale was 3.5 mm across. I've been sick w/ this crazy 24-hour "morning" sickness which is the total pits (spaghetti and red sauce for dinner every night again), but the doctors say that's a really good sign for the viability of the baby. We're trying to figure out which room we'll empty for this one... a daunting task. No pics yet -- next sonogram is at 11 weeks.

Labels: rowan