The briefest of updates

Jillian and I realize we've not posted in far too long. Truthfully we've spent these last few weeks re-learning what it means to be a family at home again; so much is familiar but everything is different. We anticipate regular updates again soon, but for now please know that we are all well, and short of a few colds Aurelia's transition could not be better.

We'll write again soon.

She Weighs As Much As Her Chart

The words of this week's Attending, Dr. Schatner. Sad, but true. She's been here for all 10 1/2 weeks of her life and papers are added to her chart every day. We're going to need another binder pretty soon! We were told that upon discharge, we will be given a CD with all of her medical records burned on it. Hopefully it will be well-organized!

I am sitting in Aurelia's 6th room in the Cardiac Care Unit watching my little girl sleep peacefully. She loves her little bouncy/vibrating chair and she seems to be snuggled in quite happily. We came back over the to the step-down unit on Sunday and were happy to be reunited with some of our favorite nurses. Nearly every face is familiar now, from patients to parents to the wonderful folks that clean Aurelia's room (thanks Moses and David!). It is odd to see someone who is clearly here for the first time, with a look of bewilderment and uncertainty. All I can do is offer a knowing smile that says, "Don't worry, it gets better. You are one step closer to going home." Of course, for us, being one step closer to home has included a lot of steps back, including 3 return trips to Intensive Care. This most recent trip to the CICU was planned though, a place to recover from her G-tube surgery.

Our little girl is such a trooper. They started her feeds back on Saturday and just today she was advanced to her full feeds. At the moment, she is being continuously fed 23 ml per hour. The goal is to do continuous feeds over night, but to do bollus feeds during the day. This will make life easier for everyone, but our girl has had trouble with bollus feeds in the past, so we'll see how it goes.

I am happy to report that she doesn't seem to be showing signs of discomfort from reflux, so the nissan procedure seems to be doing the job that it was meant to do. She still has lots of mouth secretions (makes her look a bit "foamy" sometimes"), but they are significantly less than before.

Another item of note is that Aurelia's vocal cord paresis certainly seems to be on the mend. She is awake now and strolling the halls with our nurse. I can hear her crying/talking and they are at least 20 feet away. This is a very big deal. I was worried that we wouldn't be able to hear her at all when we finally go home, but that doesn't seem to be the case at all! In fact, I think that she quite likes the sound of her voice and is spending time chanting and talking so that she can hear more of it!

In "other" news, Madison had a bout of a stomach bug for a couple of days at the end of last week and I caught it on Saturday night into Sunday. I stayed in bed for most of the day and finally started to feel somewhat human again by Sunday evening. My mom woke up this morning with it too. When I spoke to Charley earlier today, he was on his way home from school because he too had caught the "ick" and was going home to rest and recover. It seems to be a 24-hour bug, so hopefully we are all on the healing end of it. My dad is the only one in our room who didn't get it, so perhaps it will skip him.

Santa came to visit at the Ronald McDonald House on Saturday. Madison did surprisingly well. She sat on Mama's lap, with Daddy on one side and Santa on the other. She tolerated it for a minute or so and then she was done. After sitting with Santa, children were invited to choose a toy and pick up a goodie bag. After we sat with Santa, Maddie bolted up the steps and out of the room in 5 seconds flat. She skipped the toy station all together! We coaxed her back and she picked out teddy bears for her and Aurelia. While she didn't talk to Santa while we sat with him, we had been asking Maddie what she wanted Santa to bring her and she'd been saying "Choo Choo," so perhaps there will be a train set under our tree this year!

I don't want to use the "D" word (shhhhh... it's "discharge"), but I think that we are getting closer. Aurelia seems to be tolerating her feeds and Charley and I have taken all of the classes that we need to. We both feel that we could use a refresher class in using the feeding pump that we will bring home, but we are mostly comfortable with the other things that we need to do to care for Aurelia. There is still a lot that needs to be done, but we are certainly getting closer. Maybe our next post will have the words "heading home" in the title. I'm not getting my hopes up... okay, I am. But, I'm trying to pretend that I'm not.

Will these scares always be with us?

Yesterday was very long for Jillian and I, but even longer for Aurelia. We're stressed about so many things. Jillian is simply done with being away. I don't blame her. She hasn't said much at all on the blog about her ordeal, but this has been one of the hardest paths she's ever walked, if not the hardest. She's finished with being at the hospital, being away from home, living out of a suitcase, keeping Madison away from home, trying to balance her needs, Aurelia's needs, and the feelings and emotions of family and friends, and putting up with a sometimes petulant husband.

For my part, I've shared some posts laced with some of the emotional challenges I face and did so again yesterday as we moved throughout the day's surgery. The partial nissen went well, as did the hernia repair and her g-tube installation. She spent the evening in the CICU still intubated and under heavy sedation. One bonus of being with this team of amazing professionals for so long comes from working one on one with nearly every attending, fellow, and resident that cycles through the sixth floor heart units. For example, her surgeon yesterday was the same surgeon that did Aurelia's intestinal operation on day 1 of life; her anesthesiologist yesterday was also the one that repaired her first PICC line after it went bad a few weeks ago (a month ago already, maybe?), and the attending doctors last night and today/this evening, Drs. Naim and Kirnch, both cared for Aurelia for weeks at a time.

This mattered to us because the team knew to keep Aurelia sedated while still intubated or else risk her becoming fiercely worked up and potentially at greater risks for stress-generated troubles. It took longer than we hoped for her to be extubated today, but given her respiratory history their caution is understandable. As such she's still on high flow room air through a gargantuan nasal canula, but other than the discomfort that's causing her, her breathing has been good.

Her g-tube looks good and if she maintains positive numbers through night rounds they will start her up on feeds, probably at 1/4 her caloric needs. We're excited about this for obvious reasons, but also because Aurelia had been on fluids only so much this last week that her electrolytes have been all over the map. So much so that tonight, while Jillian and I were in a class on how to administer feeds and medication through a g-tube, her heart rate began to stutter with a few early beats before crashing to the 70s. Naturally this caused more than some panic. Thankfully our girl showed her grit and brought her rate back up on her own and showed no real issues on her EKG, meaning they didn't have to administer any real kind of resuscitation.

So, now with her hernia repaired, her nissen hopefully helping with her reflux, and barring any more cardiac scares this evening, we hope to be on the path to getting fed, stable, and out of here in a couple of weeks.

And yes, we're crossing our fingers. We're not really getting our hopes up because we've been there too many times before, but we are starting to finalize our action plan for all the things that have to be in place for departure so that whenever it happens we will be able to focus on our girls and not administrative poppycock.

Hope you're all doing well, and as always, thank you for your prayers and love, and support.

She made it!

Yes! She made it. In recovery now; still have not seen her. Still getting details. Will post more later.

Yes! Yes! Yes! A fool I was for fearing her resolve!

Just got an update...

Our first update came in.

Aurelia was safely intubated and they will leave the breathing tube in until sometime tonight or tomorrow. She has received some blood, although the team planned for this and had the order ready to go. They installed another IV line to administer some of her fluids so that the team didn't over-utilize the PICC line.

Surgery for the hernia, nissen, and g-tube is going well. At least another hour until she finishes in the operating room.

Keep the prayers coming!

Tick Tock

One hour in and we are awaiting our first update. The anesthesiologist came to take Aurelia at about 1:45 and we said our goodbyes. I loathe having to let our little one go like that, wheeled away on her back on a harsh gurney. We both cried.

I am terribly nervous about this surgery for some reason. I don't know if it's because they are doing so many things at once or if it's because I fear that sooner or later Aurelia's strength will fail her, or maybe it's guilt for thinking that my baby girl's will to fight might wane sooner or later.

This was a hard week for me at home, even though I stayed in Gettysburg for only two days. I dreaded coming back because of how nervous I am about this surgery. Even normal routines like eating lunch with my colleagues took a hit as I muddled through the week. I can't explain it yet, and I know I'll be proven wrong when the surgeon comes in to update us on Aurelia's progress, but I just want this to be over and for our girl to be in the intensive care unit recovering.

Lucky Seven...

We're still waiting for surgery number seven to start. We had thought 12:30 pm would be our go time but we've only just now arrived in the cardiac prep and recovery unit. it could be anywhere between 15 minutes to an hour before anesthesia begins......

I spoke too soon....anesthesia is here.....wish us luck. Another update to come soon.