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

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: 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!!

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!


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.