Saturday, October 27, 2007

Turning a Corner?

We've had a rough couple of days, but I think we've turned a corner and are feeling more confident that Rowan's doing okay. She kept needing a fair amount of pain medicine (acetaminophen and oxycodone), she was having a very hard time latching onto a bottle to eat, and was crying a lot in pain. All of this meant we've been worried about her weight gain (or lack thereof) all week. We took her to be weighed again on Friday and she had gained 4.5 ounces over two days which was great -- she's not up to her birth weight but she's making good gains so we can relax a bit. We've got a pediatrician appointment on Monday to check-in about her feeding and weight and just to get some general questions of ours answered.

Friday afternoon we had an appointment with part of Rowan's surgery team, including her lead surgeon, and they were super pleased with her progress. The swelling is way down, her tongue and mouth floor are healing nicely, and they were actually thrilled with how much she's been able to eat -- even though she's not making the 'proper' weight gains for a baby her age, she's doing great for a kid who has had major mouth surgery. We were concerned she's not learning to latch quickly enough, but they reassured us that her healing process will be 3-4 weeks, and at one week she's made remarkable progress. The pathology report came back on the cyst and, as they had predicted, it is not cancerous. Other good news is that Rowan is almost completely off her pain medications at this point and seems to be handling it alright.

[WARNING: medical content ahead -- those of you who might be squeamish (i.e. Josh B.) may not want to read this part. Personally, I think it's interesting]

The pathology report also showed that the cyst was not a ranula cyst from the salivary gland after all, but was instead a foregut duplication cyst. These are super rare -- she is possibly only the 10th case in existence ever to have one of these in her mouth (if you're interested, here's an article). Basically, when she was a ball of cells and they were dividing the work, the cells that eventually became the GI tract split up and a few of them migrated to where her mouth and throat were and then did their thing, actually starting to build a GI tract under her tongue. So what they removed at her surgery was a GI tract that started in the wrong place and then petered out. I think this is really cool -- it kind of skeeves James out. The great news about this is that a ranula cyst might've come back, but a foregut duplication cyst will not because it's associated with a specific stage in embryonic development. Which is great news!

[End medical content here (those who are squeamish can resume reading).]

My Dad went home on Friday leaving us alone with the two girls and we survived :) We're both feeling much better about everything, which is in a large part due to the fact that we're getting caught up on sleep.

Tuesday, October 23, 2007


We are now home!
Rowan was discharged about an hour ago, and we are home.

Everyone is doing very well and Emily and I are thrilled not to be in the hospital anymore.
Rowan is currently sleeping and Emily is getting Pippa up from her nap-- they haven't seen each other since Saturday, so I'm sure they're both thrilled with that, too.

More later.

Monday, October 22, 2007

Things Are Looking Up

We had a down and up day today. This am the speech/ot person evaluated her suck/swallow reflex and said we could start bottle feeding w/ doctors' go-aheads. She thought it would be a multi-day process of slowly decreasing the amount of tube feeding and increasing the amount of bottle feeding. We were bummed because this meant we were looking at a release day of Wednesday at the earliest, but more likely Thurs or Fri. A couple of hours later, our nurse said the docs had given the go-ahead for all feedings to be bottle vs tube based on the fact that she sucked down 30 mL in 10 minutes and was clearly ready for the bottle -- this is great news because it means if things go really well tonight they might send us home tomorrow, otherwise it'll probably be the day after. Rowan's surgeon also visited her and was pleased with how the swelling is going down and with how well she's doing in general. It's so great to have her only attached to one machine now (measures oxygen saturation in her blood) -- we actually put her in real pj's! She's currently sound asleep in the bassinet after falling asleep in James' arms. I'm also excited because even if we don't get released tomorrow I'm going to have my mom pick me up from the hospital and take me home to see Pippa (I can't drive yet, and one person has to be in the room w/ Rowan, so James can't take me). I can't wait to see her again!!

Sunday, October 21, 2007

She's Sleeping Soundly Now, But....

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.


Friday, October 19, 2007

One more day in PICU

Just a quick update: Rowan will be spending at least one more day in the PICU, then should be released to the pediatric wing with us for a while. She still has a lot of post-operative swelling in her mouth and tongue, and although they don't think it would impede her airway, they don't want to remove her breathing tube, since the swelling would make it hard to put back in should anything go wrong. Although we're anxious to move things along, we don't want to rush anything needlessly. Everything else seems to be going great, and everyone at the PICU has said that she's in really great condition.

So for now, the order of recovery should be this: swelling should start to come down; the breathing tube should be removed; we'll get discharged to the pediatric wing; then as her tongue heals more, we'll work on bottle feeding again. Once she's able to feed orally, we should be able to get her home. We're hoping all this happens pretty quickly, and indications are that it should, so we're just looking forward to getting things all back to normal.

Thursday, October 18, 2007

Quick update: surgery successful

Rowan had her surgery early this afternoon-- the surgeon was very happy with how it went. They were able to remove the rest of what turned out to be a very large cyst from the floor of her mouth. Thankfully it was very easy for her to differentiate the different tissues and to separate them cleanly.

Right now, Rowan is in the PICU and is sedated and will be until tomorrow morning. Then they'll remove the breathing tube, and assuming she breathes well on her own, she'll be moved to a private room on the pediatric floor. We don't know how long she'll be there, but we'll be able to stay there with her. The length of the stay will depend mostly on how quickly her tongue gets full mobility back allowing her to swallow and feed well.

All in all, we're really excited, and we're not expecting to need any more surgeries. According to the surgeon, the cyst shouldn't recur, and there don't seem to be any other issues to deal with. So after her tongue heals we should have a normal, healthy, big baby girl at home.

Wednesday, October 17, 2007

Surgery Tomorrow

Just a quick update, after several appointments and lots of running around, Rowan's surgery is scheduled for 12:45 tomorrow (as long as we're not bumped by emergencies). It should last about three hours after which she'll be taken to the PICU (pediatric intensive care unit). Our best guess is that she'll be in the hospital for a couple of days, but it could be as little as one night or as long as weeks depending on repercussions from the procedure. We'll try and update the blog tomorrow after her surgery.

Tuesday, October 16, 2007

Follow-up surgery scheduled...

...for Thursday, probably in the afternoon.

We had our appointment with the pediatric ENT surgeon this morning. She was very pleased with Rowan's tongue movement, and with the fact that the swelling seems to be greatly reduced.

All that said, there is still a lot of extra tissue connecting her tongue to the floor of her mouth, and pushing her tongue up from a normal position. This is what they're planning on excising, allowing Rowan more freedom of movement and a more natural positioning for her tongue. We're all hoping that the tissue is well stratified allowing for easier removal with less chance of causing damage to the attached tongue and mouth floor; meaning that it's easy to determine what is tongue and mouth and what is cyst tissue. We won't know for certain, though, until after the surgery. Also, following the surgery, Rowan will probably have to spend anywhere from a day to a few days, back in the hospital in the PICU (pediatric intensive care unit) until her tongue heals enough for her breathe without the breathing tube (which will go in during the surgery) and to resume regular feedings.

Changing gears a bit, these past two days have been hectic and definitely tiring, but it's been great to have everyone home together. Pippa seems to be fascinated by Rowan (or 'Ro-Ro' as she calls her) and has only had a couple meltdowns when she wanted to be picked up and read to while I've been feeding Rowan-- perhaps her first inclination that her world has been radically changed without her consent? The dogs seem to be accepting of Rowan as well, so that's also been a relief. Emily's recovery is going much better and quicker than it did with Pippa and she's looking forward to getting more mobile and being able to pick up Pippa again soon (the cut-off is 20 lbs -- which Pippa clearly exceeds).

Sunday, October 14, 2007

photo time (too tired for captions)

Quick update: We're all home!

So we really didn't think that this would happen, but Emily and Rowan were both discharged today, and we are home.

Pippa's still napping since before we made it home so she hasn't laid eyes on Rowan yet...

More info later, but it looks like we might need a follow-up surgery for Rowan this Thursday, just to remove some excess tissue under her tongue, but everything so far has gone better than we had let ourselves hope.

More photos will come soon.

Thursday, October 11, 2007

Rowan photos!

So here are a few photos of Rowan and Emily-- she's still in the NICU and is hooked up to some wires for monitoring her vitals, and still has one tube in her mouth for helping to drain some fluid. Her breathing tube was removed mid-afternoon, and she's been doing great. Hopefully tomorrow the last tube will be removed and she can start to feed.

yes, she has lots of brown hair-- Pippa did too when she was born, and look at her now.

Rowan Margaret!

Great News!
Rowan Margaret was born at 8am this morning.
She is a whopping 9lbs 4oz and only 19" long.
She's seems really healthy and very active.
Emily is doing well, in her recovery room, and is currently enjoying a sumptuous clear fluid lunch (mmmm, broth and jello!)

Everything with the delivery went just about as smoothly as we could have hoped. They were able to drain the cyst in her mouth easily, removing some of the excess tissue right then, and were able to establish an airway without needing to perform a tracheotomy. She's in the NICU now, and they're planning on removing the breathing tube this afternoon-- she never needed additional oxygen or breathing support, just the tube to make sure she had a clear airway. Once the tube is out we'll know more, but it's possible she might not need any additional surgeries... we'll just have to wait and see. As far as anyone can tell, the cyst appears to be an isolated problem as we'd hoped, and doesn't seem to have caused problems for any other part of her tongue/mouth/face.

We'll try to post some photos as soon as we can and post updates frequently.
Thanks for everyone's good wishes and support.

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