Tuesday, December 28, 2010

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.

Tuesday, December 7, 2010

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.

Friday, December 3, 2010

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.

Thursday, December 2, 2010

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.

Sunday, November 28, 2010

Back a little closer to home...

So we're back in the CCU! Since we've been gone they've upgraded the rooms with new all-in-one computers and televisions. We are back in the same room we were after Aurelia came back from her first PICC line, when her airway first collapsed and the NEC watch sent us back to the CICU. I don't mind this case of deja vu if it means we get to come back to the CCU instead of leaving for some place a little more urgent.

In sadder news one of our housemates, a wonderfully nice family from New Jersey, lost their CHD baby, Luawn, last night. She had a defect very similar to Aurelia's and unfortunately developed a secondary problem that resulted in her heart's ventricles never fully relaxing. As a result her heart couldn't fill itself with enough oxygenated blood between beats. Her folks got the call around two o'clock a.m. and when they arrived they removed all the tubes from Luawn's body and she rested peacefully in her mother's arms until she passed away.

It's a tough reminder about the dangers of a CHD when you see so many of these babies that fight just as hard as Aurelia lose their battles. We can only hope that what afflicts Aurelia cannot match her own determination and strength. When combined with the skill of this amazing medical team we have faith that our girl will give this fight all the will she can in order to live a full and healthy life.

Still, things over here are much better for our little A. She's off oxygen and the high flow and is only on a room air canula. She had a little gas this evening and so was a bit fussy, but our awesome nurse Laura (who has been nothing short of magical) takes such good care of her that with only a burp and some anti-gas medication our little girl is sleeping soundly.

we hope that the news about the NEC watch continues to be good and that after the treatment course ends Tuesday we'll get good news about a surgery schedule for Aurelia's hernia, nissen, and g-tube.

One last note - Grandma Dittrich left today for Connecticut after a two week stay and her help was invaluable. She took great care of Madison and Jillian, and poured out love on Aurelia. Madison is voicing all the words Grandma taught her and loved taking walks around the city with her Grandma. They read so many wonderful books together down in the play room and it was the first time in some time that all the wash was up to date and the room here at the house was clean.

We will all miss her much! Grandma and Grandpa DeAlessio arrive some time today barring any misfortune on the roadways, and we hope they make it here safe, sound, and in a timely fashion!

Friday, November 26, 2010

Black Friday? I don't think so!

Today most certainly does not fall under the title 'Black Friday' when talking about Aurelia's progress. Even though a PICC line is one of the most common surgical procedures performed at CHOP, Jillian and I worried that Aurelia's exposure to ketamine (again!) combined with her exhaustion would lead to more disaster.

Happily she proved us wrong. Jillian woke early to be with Aurelia while I cuddled with Madison to prevent catastrophic family meltdown. Though scheduled for an 8:30 a.m. departure, anesthesia took Aurelia at about 7:45 making Jillian's early arrival at the hospital fortuitous.

It turns out that Aurelia had a great night last night, sleeping soundly (so soundly she set off brady alarms a few times because of how deeply she was out and how much her body shut down to recover from the previous few day's trauma). The staff checked on her during these times, but expressed little concern because her SATs didn't drop significantly at all. In fact, by the time she was wheeled off to anesthesia this morning her high flow oxygen had been dialed down to 5 liters at 20 % or so oxygen. That was great progress from the previous two day's disasters on CPAP.

When she returned from surgery we nervously awaited the summary from our nurse, Mike. Turns out, she did great! She came off the ketamine a bit cranky (not unusual for a kid coming down off a hallucinogenic high!) but never had any real distress breathing or any elevated heart rate! Yes! She rested comfortably for several hours and other than being a cranky mccrankypants over a few wet diapers she handled today like a champ!

The NEC watch continues to go well. They got her antibiotics hooked up to the PICC and started her on TPN as well since the only real issue she still faced this morning came from no nutrition during the previous 36 hours. The last bit of fussiness I observed came when they removed her secondary line (the third IV she had in these two days), and no wonder considering that it too had infiltrated. That's three IVs that didn't last 24 hours! Our poor girl's veins are so battered!

Thankfully the phlebotomy folks got their labs done right after the PICC installation, so the blood draw could be done cleanly without contamination, and she was asleep for her NEC x-rays. The film came back negative for pneumatosis, which is super, and her labs showed only a drop in glucose (likely due to her lack of feeds). Her bowel movements still test positive for NEC, but she's had no physical symptoms - blood in her stool, pneumatosis in the bowel wall, hardened stomach, etc., so the course of action to fight off this infection is the same - another 5 days to go on this barrage of antibiotics and hopefully we can get a schedule for her last surgery sometime by the end of next week.

This afternoon Aurelia flashed her smiles at everyone. She engaged her hanging toys, listened attentively to her music, stretched her tightened upper torso quite a bit (PICC and all!), and settled into a great night's sleep again. Her night nurse, Cathy, was with Aurelia the night she was transferred over from the CCU, and she agrees that she looks marvelous, comparatively.

I'll leave you with a couple of clips of our girl. The first is her yesterday, after they got the CPAP off her. She was so happy! The second is today. About 45 seconds in you'll see her flash that smile!

Oh, and last thing - tonight as I left her bed (Mommy was home putting Maddie to sleep) I kissed our sleeping Aurelia on the forehead as she slept......and she smiled at me in her sleep. My heart melted and I immediately fell in love with my daughter all over again (and about 10 times harder I might add!)

Wednesday, November 24, 2010

The world shifted and someone forgot to tell us

As many of you know from our facebook updates, text messages, and phone calls, we are back in the intensive care unit. Here's today's tale as best I can remember it:

I got up at 4:30 this morning and went into the bathroom. I planned on taking a shower and driving to work from Philly this morning. I wanted to spend as much time with the girls as I could and Madison has been having a good number of Daddy-days this week and I planned to take advantage of that all I could. I stepped out of the shower, toweled off, dressed, etc., and stepped out of the bathroom to hear Jillian on the phone.

Dr. Jansen had called from the CCU; Aurelia was on her way back to the CICU with the approval of our current attending, Dr. O'Connor. Jillian absorbed all Dr. Jansen told her with magnificent clarity. She told me that after we left Aurelia last evening she never really settled down to sleep. Problems escalated through the evening and combined they led to the decision to intervene and change the level of her care.

Yesterday afternoon Aurelia had a procedure to drop her feeding tube from her duodenum (which had been operated on during her first day of life) to a spot further in her intestine. We hoped to increase her comfort over the next week as we prepared for a g-tube by lessening her reflux, gagging, and spit-up. The procedure took over an hour and reportedly gave the people in Interventional Radiology quite a challenge. As a side note, Dr. O'Connor is disturbed by this and is investigating why a relatively simple procedure became so difficult.

Aurelia took to her feeds after the procedure well and returned to full feeds by the time Jillian and I returned to the Ronald McDonald House. A constantly elevated heart rate of 180 gave the team some concern, but Aurelia had a very long afternoon and we thought with rest she would eventually calm down. Between when we left at 5:00 p.m. and when we got the call at 4:00 a.m. Aurelia's condition worsened instead of improved. Her heart rate never dropped and as the evening wore on she became increasingly uncomfortable. They stopped her feeds and ordered an x-ray.

Around 1:00 a.m. they got the first film back and it showed possible evidence of necrotizing enterocolitis. That's right, NEC had returned; or at least it might have. To be sure, the team ordered another film and restarted Aurelia's feeds until they could be positive that a NEC watch would be appropriate. As the feeds began again Aurelia became more distressed. Her heart rate remained elevated and her respiratory rate climbed.

The second film, taken around 3 a.m., revealed evidence of pneumatosis, or gas cysts in the intestinal wall. At that point the wheels began to turn and they started the process of another transfer to the CICU. Aurelia became increasingly troubled as phlebotomy struggled to find a vein for an IV. They found one, she went NPO (pre-operative fasting, or removal of all food and supplement with fluids only) and the transfer was completed about fifteen minutes before our arrival here at 5:10 a.m.

At this point today's tale becomes more disconcerting to Jillian and me. Her nurse here from 5 to 7 a.m. seemed competent and worked with us as Aurelia was stuck for labs, lined up for another x-ray, and scheduled for a second IV. Apparently her heart's hard work during the previous twelve to fourteen hours had 'chewed up' some of her platelets and she needed a transfusion to maintain optimum blood count. This transfusion would require a second IV. Rightfully so, Jillian and I hesitated over this course of action and expressed concerns at the duress IV attempts always caused Aurelia. While a simple procedure, IV placement takes so long and requires so much stress for her that we felt this a bad idea. The need for her to maintain an optimal blood count won out, however, and the IV plan went forward.

We didn't express these concerns lightly; Aurelia's tracheal malasia flares up when under physical stress and she had weakened herself with 12+ hours of 180 bpm of heart racing exhaustion and crying. Add to that her vocal cord paresis and we felt that additional trauma at this point in the morning would not serve her best. We left to get something to eat and when we returned we found Aurelia with a blood soaked right foot, blood on her bedding, and her face strapped to a CPAP machine.

It felt like someone had rotated the earth a half turn and left us standing stock still. Our girl had been fine the day before; we even got permission to start taking her on stroller trips around the hospital! We had rigged her crib with visual stimulation, her OT exercises were going wonderfully, and for the first time we really felt as if the end was near. All we had to do was get that g-tube in, get trained, and one week later we would be home. Now our daughter's hypersensitivity is in overload thanks to the ridiculous CPAP, with sedation and anti-anxiety medication the only things keeping her from lashing out over hunger and the harness, she's on 6L of 30% oxygen, two IV's in her, a blood transfusion completed, NEC invading her bowels, getting x-rays every six hours, and belly measurements every four. To top it off, the bungled second IV and transfusion fiasco so upset Aurelia that her airway completely collapsed, her oxygen saturation dropped to the 40s from the low 90s, and her heart rate plummeted from 180 bpm + to 80. They had to manually pump her oxygen to keep her heart beating and her blood saturated until the CPAP could be hooked up.

I still don't know how we got here. What a vicious reminder of how precarious Aurelia's health is, even as we prepare to leave here in the coming months. I'm scared of what the future will hold for her, as much as we love her, as we struggle to keep her well and alive. Our immediate next steps include scheduling a PICC line for Friday in a sterile environment, monitoring the pnematosis on the regular x-rays, pump her full of a broad spectrum antibiotic cannonade against the NEC over the next seven days, ween her off the CPAP machine, and get her strong enough to endure a three-fold surgery scheduled for late next week.

General surgery came in to see her and their assessment is another open body surgery to repair Aurelia's hernia, insert the g-tube, and conduct a nissen fundoplication. I'll post more on the other issues and concerns in upcoming posts, but that's where we stand now. We're being booted from the CICU while they bring another baby back from surgery, so we're going to dine with Madison for dinner and then visit with her for the pet-therapy dogs that come to the Ronald McDonald House every Wednesday. We'll be back here tonight I'm sure.

We'll keep you posted as best we can and thank you to everyone for your positive thoughts, well wishes, offers of help, and prayers. You are the strength that keeps us going.

Monday, November 22, 2010

A few photographs of Aurelia and Madison

It's been a while since we've posted just photographs of the girls, so here you go!











Saturday, November 20, 2010

Multicystic Dysplastic Kidney

As Jillian and I begin what we hope is our final month in CHOP (during this stay, anyway) I wanted to do a series of posts to help me keep my head straight about all the issues Aurelia faces/faced/might face. It will help us maintain a running record of Aurelia's treatment and I think it might help some folks get a better understanding of the complexity of some of the things we mention here.

So, I'm starting with Multicystic Dysplastic Kidney, or MCDK. Aurelia has a right MCDK and a normal left kidney. Her left kidney does present a bit higher than normal in her body but functions like a champ. This was discovered during our Fetal Health visits last summer after the HLHS revelation. In essence, MCDK is a fetal malformation of the kidney where multiple cysts of varying sizes fill a kidney. This affliction impairs kidney function, obviously, but in Aurelia's case she has maintained very slight functioning up to the present.

We monitored her kidney every two weeks with an ultrasound, and now that she's born we'll be keeping an eye on it with regular imaging diagnostics. Typically infants with MCDK will experience regression with the damaged kidney, resulting in either kidney death or actual degradation of the organ until it shrivels up and *poof* disappears. Given that Aurelia still has very minimal function in this kidney, it's not likely that we'll see either of the previous outcomes happen for her.

To help you get a feel for what this looks like, here's an image of an infant with the exact same issue affecting Aurelia - a MCD right kidney and a normally functioning left kidney:



The right kidney actually appears on the left of the screen, but you can see the cysts of varying sizes. quite clearly. This is a highly detailed MRI, but even on an ultrasound you can clearly see the cysts present in the kidney. Aurelia has had a renal ultrasound (RUS) and a voiding cystourethrogram (VCUG) to determine the severity of her defect and the level of kidney function present.

Of particular concern is any back-flow of urine from the bladder into the damaged kidney which can cause catastrophic infection (not your normal UTI) and other risks, such as rupturing cysts, etc. Aurelia presents no such complications at this point. The slight function will likely end at some point and we may have to make a decision about how to proceed with the kidney; let it die and see if it will shrink and disappear or remove the kidney via surgery to prevent any future complications.

Treatment includes a daily regiment of Amoxicillin to prevent the infection and it is possible that she will take that for her lifetime. One problematic side-effect to the early and frequent use of antibiotics in CHD babies is an increase in the occurrence of NEC, which did appear in Aurelia after one month of treatment for her MCDK.

A great site that summarizes much of this information is http://www.childrenshospital.org/az/Site1318/mainpageS1318P0.html


The urology team here at CHOP

Wednesday, November 17, 2010

Split Life

Noises echo more at night when you are alone in a house. The first few times you call out to pets or talk on the phone it surprises you, but you get over it quickly. The tricky thing about those amplified echoes is how they insidiously sneak up on you and strike at particularly fragile moments.

Waking up at 2:00 a.m. alone to go the bathroom is one of those times. You open your eyes discovering that even the cats have abandoned your bedside as you fumble for the covers in the gloom. Stumbling into the bathroom isn't all that bad and neither is relieving yourself, but when you flush the toilet, that's when the echo slaps you awake by boxing you right about the ears. Instantly you remember how alone you are and you're painfully aware that what was home is just now house.

Your mind stirs all of that around for a few minutes and inevitably faces of your wife and kids float through your mind and each image makes you feel more alone in the black. Darkness expands in those moments. My bedroom becomes an abyss and I'm floating in limbo with a hope that sleep will come again quickly. Sometimes the minutes drag out interminably and sometimes a glance at the clock shows that hours have passed in overbearing silence.

Strangely that same limbo is in Madison's eyes. When I prepare to leave the Ronald McDonald House after a visit I can't help but look at her. I love her honestly and openly and fervently and she moves through life with easy smiles and infectious laughs. Children and adults move toward her inexorably, pulled by the gravity her joy radiates. You should see her walk through the common areas of the house - it's like watching planets spin around the sun. People, strangers even, call out her name in hellos and grins and she moves with real purpose in everything she does.

She had me in orbit from the moment I saw her, of course, but on those days when I am preparing to leave her and Aurelia and Jillian behind I feel so torn. I feel ripped and and shredded inside because leaving her there is unnatural. I look at her marvelous hazel eyes and feel the full force of her love and adoration. I'm forever bound to her as she moves through life, but it's as if some dark matter yanks me from her. When I'm looking at her in those moments I can almost feel the tug at the back of my neck and it's unyielding.

The moment I say goodbye and turn to go, even if my family is still in sight, I can feel that endless black everywhere. I can look at them and smile, or wave and cry, or tell myself that it's only for a few more days until I see them again, but I'm over the event horizon by that point and I can't even hear what I'm trying to say. The safe passage I took around my daughter and family vanished and I'm drifting through endless space.

It's like time slows to a near crawl in that black hole where I'm away from them. I can't stand to be anywhere but there. I'm motionless like a clock that's lost it's tick and as useless as one without its tock. I get home and unloading the car is a daunting task, let alone cleaning up after the cats or doing laundry or putting things away. I'm paralyzed by being 'home' and I refuse to think or do. I protect myself from limbo by doing nothing because doing anything means noticing how empty it is in Gettysburg for me. Instead I'll read, or turn on HBO to lose myself in re-runs of Boardwalk Empire or InTreatment (I think I'll need more of that myself once this is all over!), or I'll play on the computer or PlayStation or XBox.

Even in the morning I wake up as late as I can so I reduce time in the house to its absolute minimum. Driving to school is easy because I can lose myself in the trip and work itself is nothing compared to being away from my family. Being there is surreal because I have an ethical obligation to do best by my kids and an overwhelming ethical need to be with my family. I teach with enthusiasm still and am prepared enough to get through most of the day without letting on my frustration and exhaustion, but my heart and mind is always somewhere else. I'm listening for my phone, thinking about Aurelia, fighting off fears about going home alone, worrying about how all this is hurting Madison and Jillian, and all my students see is a smile and laugh and an activity on the moral imperitive of a Senator to submit to the will of the constituent. God how sanitized I make this seem during each day.

Every now and then I slip and fall into limbo at work. It usually happens in the hallway or faculty room or on the stairwell. In the relentless pull of being torn away from my familiy everything about me sags. My eyes deaden and my cheeks slacken down over my jaw. My shoulders droop and I lean forward over my feet and the bags under my eyes take on weight. I hate being seen like this, stuck in two places at once and unable to be free. It's not right or natural, or at least that's how it feels. I *need* to be there. I *need* to be with Jillian. I *need* to be with Aurelia. I * need* to be with Madison. I *need* to work because 62 days of Jillian being away and us being on one income means you lose all your savings. I *need* to be here to teach as much as I can because I am a professional that knows his work matters to the lives of kids (not just their minds). I *need* to be happy and smiling for my own sanity sometimes and to fake myself out over this misery and split. I *need* so many things and being this split is not one of them.

I know time passes. I know I'll be back with them in Philly soon. I know that when I'm there I'll be swallowed up in euphoria. I know that when I'm here I do good work and make a difference for kids. I know that foundations and family and friends will come through when needed and that finances will take care of themselves. I know that even the house needs its attention and affection and it's not a bad place to be. I know that so many more are thankful for so much less than me right now, but when I'm split it feels so hard to do anything right.

Sometimes you feel like you let your colleagues down, because they are lifting your dead weight. Sometimes you feel like you're letting your family down because they are struggling along without you. Sometimes you feel like you're letting yourself down when you lack the will to change or act, but all of this is sometimes. That's the thing about this stupid split life - this is all sometimes and never all the time. It can be maddening because you are never one thing. You're only some thing for some of the time and you're still some other thing for some other or that same time, but never all the things you need to be.

I know this whole part of the marathon is coming to a close soon (I hope) but I hate this split life. I can't wait for my selfishness to be fulfilled so that my family is all together and we're figuring out our new life from one place all the time. I know it'll come in time, but for f*ck's sake, now is time enough!

Friday, November 12, 2010

A Different Kind of Post...

Hi Everyone,

Before I go into something a bit different for this blog post, I will let you know that Aurelia has been having a very quiet few days. She will be up to her full feeds (23 ml an hour) within the next 24 hours and the plan is that she will go for a milk scan on Monday to determine whether or not she has reflux. This will determine the type of feeding tube that she goes home with. She has seemed much calmer and easy to settle over the last few days, which has been a delight.
My mom left yesterday. After eight weeks away from home, it was time for her to take a break and go back to CT for a couple of weeks. I have had Madison to myself since yesterday morning and while I miss my mom and all of her help, it is great having some alone time with Maddie. I think that this is probably our last chance to be alone for quite some time. Charley will be arriving late tonight. Our nanny, Raquel is going to visit this weekend. And Charley's mom will be here on Monday for a week or two. It will be great to see everyone, but I am really enjoying the time alone with my girls. I am without a car now, so Maddie and I walk to the hospital. The weather is gorgeous, though a bit brisk. We bundle up and Maddie rides in her stroller. She loves pointing out all of the trucks and buses (two words that I don't think she would have mastered quite so soon at home, where we don't see trucks and buses as often as we do here!).

The title of this entry is "A Different Kind of Post" and this is the reason why: I'd like to tell you about my amazing co-workers. A few weeks ago, one of my co-workers (Kendal) emailed me and told me that there were 11 folks from my work who had been working on a quilt that our Staff Association planned to raffle off and donate the proceeds to our family. I was really touched and asked Kendal to send me a picture of the quilt when it was complete. It isn't quite done yet, but I have included a picture of the front at the top of this post. You will see that there is one tiny gold square that represents our beautiful Aurelia. The quilt is absolutely gorgeous and I am so humbled by the generosity of my co-workers. Thank you, Ladies, so very very much.

The plan was to sell raffle tickets at my work's annual Staff Day, which takes place every year on Veteran's Day. My awesome and amazing co-workers figured out a way to open the raffle to the public, which is why I'm writing about it on here. Lots of people have asked how they can help us and this is one way to do so!
The quilt is a twin size blue and cream single Irish Chain with one little gold square for Aurelia. They are selling tickets raffle tickets now ~ $1 per chance or 6 chances for $5. If you are interested in purchasing a raffle ticket or in learning more about the quilt, you can contact my co-workers at: staffassocquilt@carr.org. Thanks so much and I can't wait to hear who wins the quilt! I'm sure that it will be a beautiful touch to anyone's house!!
Love,
Jillian


Wednesday, November 10, 2010

PICC part 2 - much better!

Aurelia came through the PICC rewiring just fine. Thank you so much for all of your prayers, good thoughts, and touching comments/emails that you have sent our way. Aurelia is currently resting back in her bed in the CCU. Her feeds will be started back up momentarily. I'm heading back to the Ronald McDonald House to have dinner with Madison and my mom, and then I'll head back here to check in on the Peanut.

The Next Step

It has been a week since my last post and quite a bit has happened. Aurelia is back in the Cardiac Care Unit (out of ICU), which is great. I was initially nervous about her move back, but she has handled it really well. In fact, I was thrilled that one of our favorite nurses, Laura (who was with Aurelia the day she got moved back to the CICU) was with us again. She was with us for a few days, so that helped to make the transition back to the CCU much easier.

The other good thing about the move back to the CCU is that we are now in a private room. This makes bringing Madison for visits a lot easier. I can close the door to the room and let her play and visit with her sister, without disturbing anyone. We are up on the 6th floor (which is where we've been all along) and we finally have a great view. Maddie loves to look out the window and point out the buses and trucks as they go by on the streets below. She also enjoys sitting in her sister's crib while Aurelia is in the crib too. Usually A is in a bouncy seat, positioned in the crib too. Madison's latest joy is to unswaddle Aurelia and ask whether or not she pooped. It sounds hilarious to hear Maddie say in her high pitched and french-accent sounding voice "she poop?" Maddie insists on giving Aurelia kisses and likes to show her the various teddy bears and other animals in Aurelia's crib. It is very sweet that she can spend some time with her sister and that she seems to be so loving toward her.

Aurelia is back on food and while this is a very slow process, it has been going relatively well. Because she was without food for a full week, they started her back on 3 ml an hour for about 2 1/2 days. After that time passed, they bump up her volumes by 1.5 mls an hour every 12 hours. At one point, they had to stop her feeds because Aurelia was retching a bit. They stopped them for a few hours and then started them back up again and she seems to be tolerating them well. As of 5:30 this morning, she was up to 13 mls an hour. The ultimate goal is 23, so we are getting closer. However, at 5:30, they had to stop her feeds because she is going for another surgery this afternoon.

Yes, you read that right. Another surgery. On Monday night, they were changing the dressing on her PICC line (which has to be done very carefully). There are 2 lines, or lumens, that go into the PICC. When she was on her NEC watch, they were using one of the lumens to deliver her antibiotics. The other line is to deliver her nutritional supplementation. She is no longer getting antibiotics, so she she really only needs one line to get her nutritional supplementation (which she needs until she is back up to her 23 mls an hour of breast milk). Because the second line is not being used, the nurses have to flush the line every 12 hours, just to make sure that it doesn't get clogged, which could be an infection risk. To make a long and frustrating story short, when they were changing the dressing, one of the lines got twisted and is no longer flushable. This is definitely an infection risk. So, she has to go for another surgery and get the PICC line rewired.

My biggest fear right now is that she will have another bad reaction when she comes off of the anesthesia. They are planning on giving her a very mild sedation through her IV, but there is always the possibility that she will need to be intubated. All of her breathing difficulties (and the tracheamalcia) came to fruition just after the last PICC surgery and I'm worried that she'll have trouble again. Once again, I have to have patience and wait and see.

This is the first surgery that Charley won't be here for and I know that it is killing him. In the grand scheme of things, this is a minor surgery. However, I keep thinking about a quote from another heart blog that I read (Adventures of a Funky Heart) where the writer said that the truth of the matter is that for a heart kid, there is no such thing as a minor surgery. Aurelia is such a strong kid and such a fighter. Right now she's pretty upset (wouldn't you be upset if you were just getting back to eating and then they stopped it again!?), so hopefully she will be right back up to her 13 mls after the surgery, which is scheduled for 2:30 today.

The plan for Aurelia, after this PICC business is resolved, is to continue advancing her feeds until she's back up to 23 ml. Once she is there, she will be sent for a milk scan to determine whether or not she has reflux. Then we will decide what type of feeding tube she'll be sent home with (which is exactly what we were planning on doing when the NEC scare occurred, almost 2 weeks ago).

On the home front, it has been 8 weeks since I have been home. Madison too. We miss home, Charley, the cats, and normalcy. We are making the best of it that we can and the Ronald McDonald House has been wonderful. In fact, I spoke this morning to a group of potential donors for the house about our story and what the house has meant to us. I hope that I was able to help them a bit because they have been so wonderful for us.

I'll try to send a quick update once Aurelia comes out of surgery this afternoon. For now, extra prayers and loving thoughts are greatly appreciated!

Love,
Jillian

Wednesday, November 3, 2010

Watch and Wait

This has become my new mantra. Watch and wait. We seem to do a lot of both when it comes to our little girl. As we have said in recent posts, it is ironic that Aurelia's heart is not the issue that continues to keep her in the hospital. The problem lately has been her breathing and I was really looking forward to getting some answers.

Yesterday Aurelia went for a test where they took a bunch of pictures while she breathed (at Flouroscopy). They were looking at her vocal cords and trying to determine whether or not her breathing difficulties stemmed from the paralysis. Today I found out the results. She does, in fact, have tracheomalacia, which was the original suspicion. I had been told that the Ear, Nose and Throat folks did not believe that it was tracheomalacia and that they thought that all of her breathing difficulites were due to the vocal cord paralysis (or really, paresis, since they believe that the paralysis is temporary), which was why she went to Flouroscopy for the non-invasive test (rather than to the OR for a bronch, which could have involved intubation).

When Roxanne, the CICU Attending this week, broke the news to me, I could have cried. Our chief cardiologist, Dr. Svwast stopped by earlier this week and gently told me that if it turned out to be tracheomalacia, Aurelia could be facing a tracheostomy and an additional 2 months in the hospital, just to get her breathing figured out (not to mention more time to deal with feeding issues and whatever else cropped up in the meantime). So, when I heard that she did have it, I was ready to cry. Luckily, Roxanne told me that while a trach was a possibility, it was not being recommended at this time. I could still come to it, but the course of treatment right now is to watch and wait. Hopefully, Aurelia's trachea will grow stronger as she puts on weight and develops further. That could very well happen and we may never have to deal with the issue of a tracheostomy. If she does require one, she could have it for a couple of months to a year. Either way, with or without the trach, the idea is to have her trachea grow and develop. It will happen, but whether or not she needs assistance is the question. Only time will tell, which is why we continue to watch and wait.

I am happy to say that her "NEC Watch" is just about over. They decided to go with 7 days, instead of 10 and she has yet to exhibit any physical symptoms. She should be getting a new NJ feeding tube placed tonight and they will start her on very small feeds tomorrow. As long as everything looks good, they will increase her feeds bit by bit each day. Once she is back up to her normal amount of feeds, they will proceed with the swallow study (which she was supposed to have last Thursday, when the NEC was first suspected) to determine whether or not she has reflux. At that point, a decision about the type of feeding tube will be made. I have strong suspicions that she is going to need the "button" or G-tube. I met a couple of 2-year old boys at the Ronald McDonald House tonight who have buttons and I was pleased to see that they were happy and very busy kids! The fact that they need to be fed through a G-tube didn't seem to faze either one of them.

So we continue to watch and wait. Aurelia was originally sent back to the CICU to determine the reasons for her breathing difficulties. Since that has happened, it is likely that she will be sent back to the CCU (the step-down unit) again tomorrow. I have mixed emotions about it. The step-down unit is one step closer to going home. I love the doctors there (in fact, I ran into one of the fellows, Dr. Janson today and we had a good chat about Aurelia's current status. It was nice because I ran into him outside of the unit and he still recognized me, remembered all of the specifics about Aurelia's case, and took the time to talk to me), so it will be good to be under their care again. The only thing that makes me apprehensive is that in the CICU, there are nurses always present. Always in the pod. And while I know that we can reach a nurse at a moment's notice in the CCU, there is not as much attention or presence as in the CICU, which makes me a bit nervous. I trust the docs though, so if they think that the CCU will be the better place for Aurelia and her care, then that's where we'll go. Until then, we watch and wait.

Monday, November 1, 2010

Simmer down now!

It's been an interesting weekend. After Jillian's father arrived in the wee hours of Saturday morning, unexpectedly, Jillian and I hoped for a nice quiet weekend. For the most part we got what we wanted, but there are a number of unanswered questions as our sixth week begins.

Aurelia's heart continues to do well. We smile some at the irony of our stay here as her heart is doing so wonderfully that our discharge could have been weeks ago! To date there are no problems with her urinary tract and the VCUG she underwent showed no back-flush into her dead kidney at all. We are still too far out to do anything about her cleft palette and the latest brain ultrasound showed that her clot is still resolving itself and shrinking every day. These are very good things!

Her genetic evaluations have come back with nothing significant that requires any immediate therapy (if any at all)  and Occupational Therapy liked her status as of last Thursday (we won't see them for some time). The Peanut's weight continues to increase and even though feeding has been a disaster she's still holding her own with only a potassium supplement to her daily nutritional fluids.

The PICC line is stable and uninfected, her peripheral line is still functioning and not painful, and the latest cardiac data on the pressures in each ventricle is good, as is the ability of her mitral valve to hold its own. The pulmonary band continues to be effective and the aortic arch reconstruction has not been rejected in any way. In fact, all of that surgery has been a success.

The treatment for her NEC has been bumped to ten days from seven, but that isn't necessarily a bad thing; her daily films show no advance of the infection, but they also do not show it lessening. Even if we *do* get the OK to start feeds again in ten days we probably won't until this airway business is completely sorted out.

The current issue on the table is Aurelia's upper and lower airway. She has had three airway collapses since she's made the move back to the CICU last Friday. She generally has one every twelve hours and only when she becomes particularly worked up. This usually follows a diaper change or a bout of hunger pain. Only one of these episodes, other than the very first which got us back into the CICU, required any kind of sedative to calm her and restore breathing function. The typical pattern for these collapses is a progressive desaturation of oxygen in her blood when she's having a fit. Then we'll see a sudden drop in her saturation levels as her airway (described as 'floppy') is unable to remain open. At this point they will slap the oxygen mask on her and pump her with anywhere between 2 to 4 liters of room air to push the airway open. They will then slowly ween her from the room air over the next few hours and she will be fine.

In the intervening time the staff suctions her nose and mouth for secretions every one to two hours. Because of her severe acid reflux (which is still being medically treated) and because they have a sump running into her stomach to keep everything out of her intestines, and because of her cleft palette, our daughter produces far more secretions in her mouth and esophagus than normal. This goop is usually withdrawn via a tube inserted through the nose into the back of the throat, or directly into the mouth and down the throat into the upper airway.

Dr. Naim is our attending again (yay!) and she'll be setting up a time for Ear/Nose/Throat to examine Aurelia's airway sometime this week. They will (or maybe not) intubate her -  something that is not good for her vocal cord paresis or future eating ability - depending on how far down they have to examine her airway. Treatment can be anything from C-Pap, respirators, to temporary or lifetime tracheotomy. If we do have to go with either of the last two issues we will be here for another two months or so, give or take. Feeding at that point will be done via g-tube. This test coming up is a bit more invasive so it counts as yet another surgical procedure down in the operating room.

So that's where we are. My superintendent let me be absent from a professional development day today so that I could be here for rounds and the E/N/T consult/evaluation. We'll do our best to keep people updated.

Friday, October 29, 2010

Rake an eel Malaysia

It has been a very difficult two days.
Yesterday Aurelia became symptomatic of NEC, or necrotizing enderocolitis (contains graphic pictures).  The culture is still growing in the lab but our doctors are calling it and treating it as NEC until otherwise proven. A particularly nasty infection of the bowels (with uncertain causes), NEC (pronounced 'neck') attacks and kills the intestines, releasing gases in the process. These gases build up in the intestinal wall and result in perforation, eruption, and tissue death.

Treatment and the infection itself is difficult because often diagnosis is made only when physical symptoms, like hardened stomach, blood in the stool, and abdominal discoloration, are noticed during routine examination. Luckily Aurelia's case was caught particularly early by complete accident. Little A's NJ tube had been moved back into her stomach the day before and she was quite irritable yesterday morning. Our nurse, Laura, (who was an angel these last few days) noticed and worked with the doctors to get an x-ray taken to be sure the tube was still in the right place in her stomach.

That x-ray revealed the NEC. Doctors are hesitant to use the word, I've discovered. I'm not sure if they want to avoid scaring us as parents or if they treat it like teammates treat a pitcher tossing a perfect game in the seventh; as if nothing special is going on because you don't want to jinx any good luck. Aurelia began broad spectrum antibiotics, taking three of the most powerful drugs available to attack this invasion. Her feeds were immediately stopped and the NG tube removed and a sump put in place to drain her stomach. The IV process was disastrous as Jillian mentioned in a previous post, but this is when today's troubles actually first manifested. During the tortuous procedure Aurelia became so agitated her lungs refused to take air. She wasn't holding her breath; on the contrary she was pulling and tugging for all her worth, but air could not get into her lungs.

This caused concern. She settled however, was taken off the oxygen she was temporarily put on, and began responding well to treatment. Other than being cranky due to her lack of food you wouldn't have noticed much out of the ordinary. They doctors scheduled a surgical procedure to insert a PICC line (essentially an IV on crack) for today. This line centrally delivers Aurelia's medicines and fluids directly to her circulatory system at a place near the heart. While prone to infection, these lines are necessary for long treatments since IV lines tend to become useless after several days (not to mention painful!).

After a quiet afternoon and night spent with Jillian while I manned the RMH with Madison and Cassandra, Aurelia treated us to a nice and relaxed morning. We went down to the Cardiac Prep and Recovery Unit (CPRU) and met with the anesthesiologist working on Aurelia today. He failed to impress us in his level of concern and approach to Aurelia. He possessed decent understanding of her previous surgeries and recognized that a different approach with ketamine would help Aurelia avoid general anesthesia. Jillian and I supported that practical course of action since it would avoid yet another intubation and damage to Aurelia's already abused and battered esophagus.

The procedure itself went well. The PICC line went up through her femoral artery and sat nicely near her heart and we successfully avoided general anesthesia. The penalty for this was increasing the amount of ketamine given to Aurelia over time in measured and small doses. Ketamine, for the uninitiated, is a sedative with a number of interesting challenges that includes a particularly nasty streak in infants as they awake. Aurelia, from 2:00 p.m. on (minus a ten minute transfer from CPRU to CCU) wailed for all she was worth. Her sad and strained cries came with increasing pain and agitation for over two hours.

It felt helpless to watch her in such a state. I still think I am reeling from the experience. Everything happened relatively quickly upon our return and even though each individual decision made in the intervening hours happened so fast it felt like I had some sort of time lapse mechanism working to heighten my senses. My ears strained to hear every word from each doctor and my heart raced. I could feel the blood pounding through my head in my ears, almost whooshing with every heartbeat.

I had just sat down to pay some bills online when Dr.Laurence, our resident, came in for a routine check. She expressed alarm at Aurelia's effort to breathe. She smiled at us, mentioned that she'd be back in about an hour to check on her and left.  Within two minutes she returned with the fellow alongside. He examined Aurelia and his normally chipper demeanor vanished. He murmured something to Dr. Laurence and left. Jillian and I knew something had gone awry when moments later he returned with our attending, Dr. Cohen.

The time mechanism I mentioned above tripped on seconds later when it seemed like our room became part of some set on ER or any other medical drama. Doctors rushed in to her bedside, her nurse scooped her up and the examinations continued. Jillian and I somehow got shuffled to the periphery and we watched this movie unfold. At the center we saw Aurelia screaming and working herself to such a frenzy she could not breathe. The attending, resident, and fellow surrounded her talking about collapsing airways and Malaysia (what the hell that had to do with anything I would find out later) and her crying being good. Other nurses arrived and the anesthesiologist came to consult on Aurelia's condition. Clearly our team in the CCU found his contributions unimpressive. Our group dismissed what he had to say because his greatest observation consisted of, "She was like this when they brought her over to us" and "She looked pale coming off the anesthesia and worked herself up, but she did calm down."

He shuffled in and out of the room for the next half hour, unwanted, not needed, and fueling rising anger and irritation in both Jillian and me. With his hunched shoulders, heavy jowls, slovenly gait, and saggy paunch he would wander bedside and make comments like, "what, is she STILL crying?" and "Is this one still worked up?" and "could this be related to her NEC?" While the venomous stare from the senior doctor on our team silenced him after that last comment, I had to leave the room previously, furious and ready to lash out at the callous and arrogant ass for his behavior.

It was like every horrible comment made by that fool punctuated the horror we saw surrounding Aurelia. First the team called for a consult from the attending in the CICU. We blanched at the request, frightened by the sudden need for critical care. The doctors kept maneuvering Aurelia around, searching for positions to ease her breathing and trying to find some way to help her get air into her lungs. They kept looking at one another and noting that she'd somehow get a few breaths in and then her body would clamp down and she'd fail to pull any air.  The CICU attending arrived and they talked in serious tones, gesticulating and touching their necks. Each kept talking about Malaysia. Some small voice in my head kept saying, "what the f*ck?!?" each time I heard it mentioned. They ran over all the particulars of Aurelia and Jillian and I chipped in multiple times when something went overlooked in the rush to get an opinion. I felt particularly proud of Jillian in that moment knowing that when she needed to be sharp and focused for our girl she shone brilliantly.

Our attending and fellow came over to us while the rest buzzed around Aurelia talking and monitoring and trying to calm her and help her breathe. They told us that while the obvious concern was still NEC it had become more and more apparent to them the last three or so days that some sort of airway problem continued to impact Aurelia's improvement. She said that cardiac babies with a paralyzed vocal cord often suffer similar issues, but that this seemed somewhat different as the problem went beyond the previously suspected lung disease. They suspected tracheal malasia. Rake an eel Malaysia??!?!

Apparently tracheal malasia is a weakening condition of the trachea in which malformed or poorly formed cartilage collapses during exhalation which prevents any air from reaching the lungs during inhalation. Dr. Cohen just finished explaining this to us when she told us that we'd be transfered back to the intensive care unit. Tears flowed in our eyes at the step back. We knew that something like this might happen but I still hate that it has. Truthfully, even typing about it now makes me cry some knowing that our little girl needs such extensive care still. She is such a fighter, but it is so hard watching her struggle and hurt so much for so long now.

It is the best place for her. Until we get this airway issue nailed down Aurelia needs the closely monitored 24 hour care. The real blow to our emotions and endurance came in two parts during this discussion with Dr. Cohen. First she talked with us about the big picture, making it quite clear that in all likelihood we will go home with a g-tube of some kind and that if this is tracheal malasia that we may be facing some very scary decisions and treatments - the kind that might forever change how our daughter looks and talks and breathes. Second, and even more psychologically damaging I think, she described Aurelia as first and foremost 'fragile.'

What a word. I know it's true and I know it has been true all along. She is such a determined girl, though that I cling to her strength. It sounds silly, doesn't it, that a 33 year old man and father of a CHD baby clings to that same child's strength? She has been the fuel that keeps me going back and forth between here and Gettysburg, or between Gettysburg and work, and above all in my own mind where I have to fight the loneliness of living alone away from my family and working long days in a thick emotional fog.

She is such an amazing girl. She gives me all the strength I need that I think hearing Dr. Cohen use the word fragile described not just Aurelia's physical condition, but also how this emotional and spiritual marathon has left Jillian, Madison and me. Of course this is all reflection after the fact, because moments after Dr. Cohen said, 'fragile' I left to store our personal affects in a locker on site and the team called her away to examine what appeared to be a hardening stomach.

I returned to see Jillian looking even more distraught. Aurelia's distress revealed a hardened stomach, a classic sign of progressing NEC. Immediately the pace and intensity in the room ratcheted up and an all hospital page went out for the x-ray unit to immediately come directly to our room in the CCU. Aurelia so discolored herself and was pushing her lungs and diaphragm so hard that she actually revealed what appeared to be a umbilical hernia. Our room was full of nurses from the CICU, our nurses, attending physicians, fellows, and residents. Even the social worker from the CICU showed up (and thank God she did) to help talk us through this disaster even as Aurelia screamed so loud we could hear her in the hallway. (For the record, that was such a feat given her one paralyzed vocal cord that we couldn't even focus and had to go back in to her room for a  moment to be sure she was OK).

I swear I felt a mixture of awe and fear and pride at the same time during all this. Fear, of course, for Aurelia and for Jillian and me, but awe at this unbelievable mobilization of medical talent and material, and pride at Aurelia's pure determination and will to fight and not give up during any of these challenges. She continues to inspire.

We made our way to the CICU and whisked our way into pod 5, bed 4, where a nurse we had previously in the CICU, Michelle, stood ready. The teams there transferred Aurelia's care with precision and focus and I thanked myself again for the CCU nurse, Laura. She stayed longer than anyone else to work closely with the CICU team to inform them about Aurelia's care and preferences, and even promised to look in on us tomorrow. Not ten minutes later the level of care seen in the CICU versus the CCU became apparent. The fellow informed us of a way to discover malasia (though Aurelia was so worked up we couldn't try it), they called for a mild sedative to simply allow Aurelia to rest, took a babygram (full body x-ray), and got labs drawn to get immediately analyzed.

Aurelia settled finally and we left her in good hands knowing that we needed to see Madison and that we could think clearer with a little distance and space. We'll keep you all posted as to how things develop and please know that your love and prayers and positive thoughts are so very much appreciated.

Thursday, October 28, 2010

Too Soon - a step back

I write this post with a heavy heart because I feel like I spoke too soon with my post froom 2 days ago. Because I am writing this from my phone and not a regular compute keyboard, I will keep this brief with the intent to post more later. Faithful readers, please offer extra prayers and send positive thoughts, good vibes, and whatever else youhave in your arsenal for Little Aurelia. She had a routine x-ray this morning that showed air pockets in her bowels. She is being aggressively treated for a life-threatening intestinal infection called necratizing endocolitis (I probably have the spelling wrong on that right now). It is also known as NEC and though she hasn't been officially diagnosed, they are really hopeful that it was caught early. She is okay right now, with the exception of some irritability and being seriously pissed off about the 4 sticks that she has already had (to get blood and to place an IV, which still hasn't been placed and is the reason why I needed to step out of her room - okay, I'm pretty pissed off about it too). Charley is on his way here and we greatly appreciate all of the goodness that you send our way. We'll update again when we are able.

Love,
Jillian

Wednesday, October 27, 2010

The Little Things

Since Aurelia's arrival, there have been lots of Big Things that we have recorded in this blog: her two surgeries, the placement of the NJ tube, the cardiac cath to name just a few. Tonight I'd like to take a few minutes to comment on some of The Small Things have meant so very much to me over the last several weeks. In no particular order:
  • Vet Dogs - the weekly program at the Ronald McDonald House that brings a number of dogs to the house, which is great for all of the children (and adults) who miss their pets while they are here! Tonight brought about 8 dogs, all in Halloween costumes!
  • The nurse who gave the simple advice of turning on the lights in Aurelia's room during the daytime. Up until then, I had been leaving them off, thinking that the darkness would be soothing to her. Now I take time to turn the lights on each day and let my little girl enjoy looking around a bit! No need to be in darkness all the time!
  • The Connolly Center at CHOP. This is a section of the hospital that has a variety of things - classes (such as the CPR class that we took a couple of weeks ago), a library for kids, sleep rooms for parents that need to stay over but don't have space in their child's room, laundry facilities, and lots of freebies. We have picked up a number of lovely handmade blankets and an adorable teddy bear for Aurelia and a fun froggy pillow for Madison. Lots of people donate things for kids and families at CHOP and this is where they put a lot of those things, which is a nice treat! They also have water, fruit, and other yummy treats out during the day.
  • Similar to the Connolly Center are the Ronald McDonald Family Rooms at CHOP. These are spaces for family to gather and visit without taking up a ton of room in the child's room, or to wait while your child is in surgery, or to just chill out in for a while. Sometimes they put food out for the families. There are also two computers for families to use, which is great to do a quick email check or facebook or blog update!
  • Cookie Decorating - another evening activity at the Ronald McDonald House (Maddie has had fun with this a few times already!).
  • Chocolate Milk - an endless supply of it, which is always delicious!
  • My Mom's help (which is actually a Big Thing, but I don't think I've mentioned how much I appreciate it). It has been really special having Madison with me during our stay here, but we couldn't have done it without help. I need to spend time at the hospital each day and it is great that she can be with Madison when I can't be with her.
  • The Nourishment Room - this is where I store my breast milk in the CCU. There is a freezer just for milk (and if you are curious, I am quite "prolific" and have actually filled 5 tubs with pumped milk so far. I'm actually going to donate some of my milk because we don't have the space to store it at home and I am currently taking up 1/2 of the freezer space!).
  • The phone calls, emails, cards, hugs, and prayers from everyone cheering for us ~ these things are what keeps us going. Many people have said how strong they think that we are and how well we are handling it. To those people, my response is that I don't know any other way to handle it. I have to be strong for both of my girls and I will do whatever I can for them. It is a lot, but the strength and support of so many others is what gives me that extra boost on the days that I have trouble finding my own strength. So thank you to all of you.
  • The prayer shawls - I was sent 3 different gorgeous prayer shawls made from various church groups (one from my own church, another from a high school classmate of Charley's and the last one from the mother of one of Charley's co-workers). All three are snugly and warm and filled with love. I have been keeping them at the hospital and use them each day.
  • Tickets - Charley's dad bowls with a guy who read our blog and felt that we might enjoy some baseball. He sent us tickets to one of the Phillies playoff games (the last game, to be exact), which was so very kind. We didn't make it to the game because Aurelia had a procedure done that day and we needed to be with her. But, we donated the tickets to another family at the Ronald McDonald House and seeing their looks of happiness was wonderful. It was so great of him to send us those tickets and we were really happy to "pay it forward" and make someone else happy too!
  • The dinners (and weekend breakfasts) at the Ronald McDonald House are amazing. Different groups come in each night and usually prepare a smorgasbord of different things. I don't think that we've had a bad meal yet. And to think - all that (plus the activities and the room) for just $15 a night. Amazing. The Ronald McDonald House is just an amazing place. I will certainly be putting my extra change into the little bin whenever I eat at McDonald's!
  • Halloween Costumes - last night at dinner, they rolled in 2 giant clothing racks full of brand new costumes and allowed each child to pick one out. I had already ordered costumes for the girls, but by a stroke of luck, my order got messed up and the original costumes that I ordered weren't going to make it here on time. So, I picked out a costume for Madison and ordered something new for Aurelia. I'll post pictures after Halloween!
  • The smiles from strangers.
  • The Fellow who always asks me during Rounds how I think that Aurelia is doing. It is great to be included and Dr. Janson really makes an effort to make sure that parents feel that they are a part of their child's care team.
  • Sleep chairs at the hospital - I don't get to nap too often at the hospital, but when I do, these chairs are the best! I can get comfy and still be two feet from Aurelia's crib. Very nice!
  • The big squeezes and Eskimo Kisses that Madison gives me each day when I head to the hospital. Sometimes these are accompanied by tears because she doesn't want me to leave her, but I still really appreciate the hugs and kisses!
  • The bow that was placed in Aurelia's hair while she was in the CICU and the Mohawk that she was recently given while in the CCU (okay, daddy gave her the Mohawk, but I'm still thankful for it!).

There are probably tons and tons more of these Little Things. The last one, which is probably the Biggest Big Thing of all is the hope that I feel for my little girl. I was so scared when I first found out that she had a congenital heart defect. We have come a long way in the last five months. And we still have a great distance to travel. But I feel hope for the future and that is a very good Thing, Big and Little!

Tuesday, October 26, 2010

A Quick Update

It has been a long time since our last post and I think that Charley and I are both feeling overwhelmed, but quite guilty that we haven't posted a decent update in over a week. We both know that this blog has a number of purposes and none of those is to add extra stress to either of us. We want to keep everyone updated, but sometime exhaustion wins out and a post doesn't happen until we are well-rested. Or maybe just better-rested.

This evening I thought I would do a quick post, just to let you know what has been going on with Aurelia. First of all, she had her cardiac catheter last Friday and while there were a couple of scary moments during the cath (her heart had to be shocked twice because it began to "flutter" a bit), she came out of it relatively unscathed. Her heart looks good. The repairs that she had during her surgery seem to be doing well. The long and the short of it is that her breathing issues do not seems to be related to the heart.

Some other events that have happened in the last few days - she is completely off of oxygen (she had gone back on it when she went for her cath and they had a bit of difficulty getting her off of it originally), which is great. Her breathing is still fairly labored and while she seems to be a belly breather, she "tugs" quite a bit when she breathes, particularly when she's worked up. I have had the pleasure of being able to calm her down on several occasions when she has been worked up. Sometimes it is hard to feel truly like a parent while your baby is in the hospital and surrounded by so many "other" people, so those moments are really special.

Her feeds is another big issue that needs to be resolved before we are allowed to go home. At one point we were told that she could go home with the tube that she currently has (the NJ, which goes into her intestines, the jejunum, to be exact). The NJ has been a huge help with her reflux and I have felt that she's a lot calmer and more serene since she's had that tube in. However, unlike the NG tube (which went into her stomach and seemed to cause a lot more reflux), it is not one that we can replace at home, should she pull it out. Because she is on continuous feeds, we would run into some real dangers if she were to pull the tube out. We'd have to get to a hospital pretty quickly and the doctors here are uncomfortable with that situation. Instead, there has been some talk about a G-tube, which goes from her side directly into her stomach (the current tube in in her nose). That would be a surgical procedure and it is not one that they suggest lightly. First of all, she'd have to go under anesthesia again. Also, while it would be much easier for us to manage at home, the G-tube is a huge commitment. Aurelia would have it for 2-4 years and while she wouldn't necessarily need it continuously during that time, she could still be "hooked up" at night and get feeds that would guarantee that she'd get the nourishment that she needs.

One funny side story that goes along with this is that I was trying to get an understanding of how the g-tube works and I asked what she would be fed during those 2-4 years (wondering about whether or not she would be able to eat table food when she reached the appropriate age) and Charley dead-panned that I'd need to pump for all that time! It was a funny moment that added a bit of levity to the conversation, which was much-needed at that moment!

It was decided that before they make a decision about the G-tube, the doctors want to give Aurelia another chance to "prove" that she has (or doesn't have) reflux. They put her on a new medication that will tone the band of the sphincter on her esophagus. This will, hopefully, help prevent reflux from occurring. They are giving her 3 days to get this medication into her system. On Thursday they are going to pull back her NJ tube back into her stomach (so it will be an NG again) and then they are going to do a Swallow Study, which will see whether or not her saliva is going where it is supposed to go. From there, they'll see whether or not she truly has reflux and then they'll make a decision about keeping NG (and sending us home with that) or putting in a G-tube (and sending us home with that).

Either way, we are getting closer to discharge. We accomplished a couple of the "housekeeping" items that needed to be done today. We went for a VCUG and an ultrasound. The VCUG was for kidney follow-up and the ultrasound was two-fold. First, they looked at her brain (to follow-up on the clot that she had in-utero). Secondly, the pulmonary doctors suggested that her diaphragm be ultrasounded, just in case a portion of it was paralyzed (since her left vocal cord is paralyzed and the two could be connected) and that was causing some of her breathing difficulties. I was able to be with Aurelia for both tests and it was another one of those "mommy moments" where I felt really proud that I knew what my baby needed when she was upset.

During the VCUG, she had to have a urinary catheter placed and then they filled her bladder with a contrast to see where the flow was going. We waited for her to pee so that they could take the pictures. When she finally did, I was happy to hear that there wasn't any reflux into the kidneys. All systems seem to be functioning normally! And then she pooped all over the table (and the technician). Another proud mommy moment :)

The results of the ultrasound were also good. The clot in her brain continues to diminish and resolve itself and her diaphragm seems to be moving, so paralysis does not seem to have occurred. We still don't understand the breathing difficulties, but we are ruling out a number of things. All good signs.

Our little girl continues to amaze us. She turned one-month old over the weekend. It is hard to believe that she's a month old already and that it has been almost six weeks since I've been home. I miss my house and my cats and the feeling of "home." Most of all, I miss having my family all together. I am happy to say that I feel like that day is coming closer. Charley and I were reluctant to set up a nursery for Aurelia prior to her arrival. We were really scared that we'd set up a nursery and then we would never bring our baby home. I think that it is safe to say that we can start thinking about how we want to decorate her room. I'm looking forward to making the choice of "Jungle" or "Zoo."

Wednesday, October 20, 2010

Days 26 & 27, some new pictures

Before the NJ tube was put in, Aurelia had an NG tube. Here she is just a few hours before she went in for the procedure:
To transport her to the IR lab, Aurelia was put into this little cart and wheeled down, along with her monitor, an oxygen tank, 2 nurses, a fellow, and me! That was quite a trip down a few hallways, on the elevator, and down a few more hallways.
When she returned with her new NJ tube, Aurelia was exhausted from the procedure. All she wanted to do was sleep! We let her.

The next day, Maddie wanted to see her baby sister. I had my mom snap this shot of the 3 of us, hoping that Daddy would see it and know how much we miss him! As you can see, Daddy left Aurelia his Yankees hat, hoping that it would give them an extra boost to make their way to the World Series yet again!

And here's our baby girl, wide awake and enjoying the afternoon!






Twenty-Seven Days Old

Today was a great day for little Aurelia. Her procedure yesterday, while exhausting for her, went well. They had a bit of trouble getting the NJ tube in, which wasn't much of a surprise considering the repairs that she had already had done in her intestines. The part that was difficult was the timing of the surgery. It was scheduled for 2:30, so she had to be taken off of food at noon. She had her last feed from 11-12 and then we waited until the IR folks were ready for her. 2:30 came and went. Our nurse, Jackie (who was so fantastic all day long - a real champ and fighter for her tiny charges and their parents) reported to me around 3:15 that IR had called and that Aurelia was next in line, after they completed the procedure that they were currently doing. It should be another half an hour or so. Aurelia was pretty content and didn't seem to be getting hungry, which was a surprise since her next feed should have been around 2 pm. At 4 pm, IR called again and said that it would be another 1/2 hour and that Jackie could go ahead and feed Aurelia. They didn't want her to have food in her belly because it would make the procedure "less messy," but since so much time had passed they didn't want to have a hungry/grouchy baby on their hands and thought that they could chance the mess. Jackie got Aurelia's milk warmed up and started the feed. She only had about 10 ml when IR called again and said that they were ready for her! Finally!

I had been told that I would be allowed to accompany her down to IR for the procedure, so we got Aurelia into a little baby cart and brought along her monitor, oxygen tank (they had to put her on oxygen for the transport to the IR lab), 2 nurses, a fellow, and me ~ and we all headed down to the lab. The trip wasn't long, just down a few halls, an elevator ride from Floor 6 to Floor 3 and a few more halls. When we got to IR, I was told that I couldn't stay. I kind of figured that would happen, but it was really tough to be sent away. The fellow, Dr. Janson told me that they'd take good care of her and that she'd be back in her room soon enough. I felt sad to leave her, but comforted that Dr. Janson and Jackie would be with her the whole time.

The wait was pretty torturous, but she came back sound asleep with her new NJ tube. Jackie said that it was tough and that they had a bit of trouble getting it in, but that our girl was a real trooper. She got a bit of a bloody nose (which sort of made me feel better, since I had given her one the day before when I placed the NG tube!), but that they got the tube in and that it was secured in place. Aurelia's heart rate (normally in the 120's to 140's) was extremely high (over 200) and they just wanted her to rest and calm down for a while, which she did after a half hour or so. By the time I left, she was down to the 150's and sleeping peacefully.

Today was a really nice day. I brought Madison and my mom to the hospital this morning and visited with Aurelia for a good long time. I got to be there for Rounds, which hasn't happened in several days. They were pleased with how she's doing, but they still plan on sending her for a cardiac catheter later on this week (Friday). It seems to me that Aurelia's breathing is much less labored and she didn't seem to be experiencing any reflux at all, which was great!

When I went back to the hospital this afternoon, she was wide awake for quite a while, so we spent a good long time just looking at each other and snuggling. I know that Charley has mentioned how much Aurelia hates having a wet or dirty diaper, so I was pleasantly surprised when I changed her this afternoon and she didn't get the least bit upset. She has been propped up/elevated in her bed for the last week or so to help with her reflux, but today she wasn't as propped ~ and she didn't seem to mind! I feel really good about the NJ tube helping both her breathing and her reflux and I pray that the pattern continues!

As good of a day as it was for me, I am constantly reminded about the fragility of our situation. I spoke with another couple tonight at dinner who are the parents to a 2-week old heart baby who had surgery yesterday. They said that it was a rough morning. They got a phone call around 5 am and they had to rush to the hospital because the baby was likely being sent back into the OR to have her chest re-opened. Luckily, that didn't happen and they were having a much better night. It is good to share in the experiences of others in this house. We were in a Family Meeting (once a month, mandatory meetings at the Ronald McDonald House, just to reiterate house rules and that sort of thing) tonight when their phone rang and the couple sprinted out of the meeting. I'm sure that it was the hospital calling and I really hope that their little girl is okay.

For now, our little girl is doing really well. As I said before, I hope that she continues getting better. This is a marathon, not a sprint. Some days it feels like we are hurdling toward the finish line and our good friends helen & Jason remind us that this is a marathon and not a sprint. It is a good mantra to keep in mind as we go through each day of this journey!