Wednesday, September 29, 2010

A daily update and life from afar

I don't know that I have the words to write about what it means to me to be here teaching again and not at my family's side, but I can share a bit of how Aurelia is doing and some impressions I've had during this first day away.

Aurelia has had some changes to her fluid intake and her electrolyte levels as they work to keep her hydrated during this time on her diuretic. She's also off the bili lights and she did have a nice time today with her mother, being held for a good fifteen minutes!

The amount of fluid being pumped from her lungs continues to decrease each day and the general surgery people were pleased with what they saw this morning during their consult. She's still on pace for heart surgery on Monday and they will do a echo sometime on Thursday or Friday to determine the procedure for her heart surgery.

Rounds this morning went well and the doctor's scheduled her for no new tests. She's off her breathing tube and while her breathing remains labored they are no longer issuing daily x-rays for her chest until there is some sign of a drop in her oxygen levels.

The urology and kidney doctors are pleased with where she is with her kidney and how she is avoiding infection, and the ophthalmologists have said that her eyes appear to be fully normal. We'll have to wait a full two months or so for the genetic screening to be completed, so until then we won't know what's possibly behind all these many troubles.

Other than that, she is looking good. Dr. Naim and Dr. Ince are just awesome and I love all the nurses that Aurelia has had during her stay. They are amazing, and having one nurse per baby is such a godsend. We can call in directly at any time and get updated (which I am thrilled about) and everyone there has been very supportive, including our social worker, Caroline, and the folks working with the COPE program (the parents study that we're a part of).

As for what it feels like to be back at school? Well, I don't rightly know to be honest. Part of me is depressed (and that good sinking heart sad depressed, too), part of me is forlorn, another part angry - at myself and the situation, and parts of me welcome the diversion that is teaching.

When I'm actively teaching I can consciously escape from all these feelings, but when I let the students do any independent practice my mind automatically switches off and those emotions come flooding back. I'm not sure how to describe it yet, but I'm working on the words. It feels a bit like a part of you is alive, but listless, almost comatose. It's not dead or empty, but it is sullen. I don't want to call it a nagging feeling, and it goes beyond persistence, but it feels almost like a hole inside that has been filled with some sort of viscous sludge that has hardened into a pit of loathsome despair.

As I find words for it I will post them, but this is a new emotion to me, different than depression or its cousins, so I want to try and wrap my mind around exactly how it is impacting my behavior.

And other good news, before I close. Jillian's mother broke down and took her to the hospital today. A major victory! Also, we were just relocated to the Ronald McDonald House five or so blocks from the hospital. This is a major victory as well!

Some New Pictures

September 28th - I got to hold Aurelia for the second time. The first time was for about one minute, just before she was sent for her belly surgery. This time actually consisted of me sitting in a rocking chair for a few precious minutes and rocking our beautiful girl. I didn't want to hog her though and gave Charley time to spend with her too. We had used up all the images on the camera though, so I didn't get a picture of him. I did take some video though, which I hope to post some time soon.

Look at those cheeks!!

Even Aurelia has Bobcat Pride! She had just had her first bili treatment "under the lights." She didn't enjoy having her little foam goggles on, but it sure woke her up for a while! Her eyes were open and she was looking around for a good 1/2 hour. She had also just gotten her nasal tube taken out. Her breathing is still quite labored, but the doctors didn't feel that the tube was making much of a difference, so they decided to remove it. As a result, we got to see more of her precious face. It was really sweet to see!

Tuesday, September 28, 2010

Jillian's Turn

Hi Everyone,

I have not yet contributed anything to this blog, but finally have a bit of "free" time and am now ready to write a little bit about my experience in this journey thus far. I am feeling pretty emotional right now. Our baby girl is five days old. I was discharged from the hospital yesterday and had to leave without Aurelia. Charley returned to Gettysburg today. It has been a long day, but I think I'd like to share with you a little bit about Aurelia's unexpected extrance into the world.

I woke up last Thursday morning to see Madison peeking over the side of her Pack 'N Play. We had been staying at the Ronald McDonald House in Camden, NJ for almost a week. My doctors had suggested that we relocate to Philadelphia early, just in case I went into labor. Thank God that we did. It was lovely to wake up to Maddie's adorable face peeking over toward my bed. Most mornings, I have been waking up facing the other direction and have been greeted by a giant SpongeBob Squarepants mural. Our entire room at the RMcH is decorated with this "Pineapple Under the Sea" dwelling character and we are all going to need therapy when we vacate this room! In any case, my mom (who is with us, to help care for Madison) was not yet awake, so I picked Maddie up and brought her into bed with me to read some stories. She wasn't in the mood for books, so she hopped out of the bed and headed over to the couch to play with her SpongeBob magne-doodle. I sat on the couch for a second or two and then felt a great rush. I had a feeling that my water had broken, but since I did not experience labor with Madison, I wasn't quite sure. Plus, my due date wasn't for another 3 weeks and my scheduled c-section wasn't for another week and a half. I couldn't possibly be in labor!

Well, I soon discovered that I was in fact in labor. I woke up my mom and started pacing the room. Mom got dressed and decided to arrange for a cab to take us to the hospital. Mom was very nervous about driving in the city and didn't want to take any risks with getting lost. I called my doctors at CHOP and then I called Charley while I waited for the doctor to call me back. Once it was determined that my water had in fact broken (there was really no doubt in my mind!!), I was told to come to the hospital immediately. Charley, who was at work (back home), made arrangements with his job and hopped in the car to head home. He had to get a bag for himself, take care of the cats, and get on the road to Philly.

I went into overdrive. I continued pacing the room, throwing things into my bag as I passed them and determined that they might be useful. I had thought about packing a bag the night before - maybe it was a premonition of what was to come, but I didn't actually do it. In fact, we were going to go to the Aquarium that day. I thought that it would be a fun visit for Madison and a good way for us to get out of the house for a bit. Luckily, my water broke long before we were out the door!

I got my things together, along with a few things for Madison, and headed downstairs to meet my ride. Fortunately, the RMcH has a shuttle and one of the drivers just happened to be walking in the door, along with the manager. She told us that the shuttle could take us. We got Madison situated in the carseat and we were on our way.

The drive was a little scary. It was rush-hour and I started to feel some contractions, which was a new feeling for me. Madison was very nervous about being in a different car and I spent most of the ride trying to reassure her that we were okay and trying to be calm through my contractions. I didn't take a birthing class this time around, so breathing techniques weren't really on the forefront of my mind. I was actually thinking - Holy Crap, I'm in labor. I'm having this baby today. This can't be happening. Charley will never get here on time and I'm going to have to do this myself.

As you can see, I wasn't the most positive thinker throughout the beginning of this process. It got better though. At least, my thinking got better. We made it to CHOP and our shuttle driver, Dan, got me into a wheelchair and brought me all the way up to the SDU (Special Delivery Unit) at CHOP. The hospital is the first pediatric hospital in the world to have an SDU, which is pretty amazing.

They got me into a room and I met with a few nurses and finally a doctor who did a quick exam and determined that my water had in fact broken (duh!) and I was in labor. I was getting scared, but I saw some familiar faces of folks that I had met during my various appointments at CHOP, so that was somewhat soothing. Dr. Kalik, who was my favorite OB that I met, came in to see me and I also saw one of the midwives that I had seen on several previous CHOP visits. Seeing both gave me a bit of comfort and made me feel like I wasn't totally alone.

They told me that there was another c-section that was scheduled, but that since I was starting to feel some contractions, they would bump that person and have me go first. By this time, I was starting to feel uncomfortable because some of the contractions were pretty strong. Charley and I talked several times that morning and we both knew that he likely wouldn't make it. While that sucked, neither one of us wanted to stress the baby any further, so we agreed that we would do whatever the doctors recommended. For some reason, the original plan to allow me to have my c-section first got changed and I had to wait while they did the other person's surgery. I had to wait while they cleaned the OR and prepped it for me. In the mean time, my contractions were getting stronger and stronger. I had a really bad one and Madison (who was in my room, hanging close to my mom), started to get upset. In a way, it was good that she was there. I could focus on her and not let the pain get me too upset, for fear of upsetting her. On the other hand, I was a in a lot of freaking pain and I really wanted my mom to take her somewhere else so that she didn't have to see me in pain.

I'm not sure how quickly time passed, but before I knew it, it was nearly noon and they were getting ready to take me to the OR. I still hadn't heard from Charley and I was prepared to be alone for the surgery. I kissed my mom and Madison goodbye and told her that Mama was going to take her baby sister out of her belly because she just couldn't wait to meet her. Throughout all of this, I kept thinking about my friend helen, who went into labor very early in her pregnancy and had to have a spinal while she was having severe contractions. When she told me that story, many months ago, neither of us imagined that I'd be in the same boat sometime in the future. Although, I will say, when they checked me in, I was only 2 centimeters dialated, so I'm sure that the contractions could have gotten a whole lot worse. For me, they were bad enough!

I got into the OR and they talked me through my spinal. I had several strong contractions during that time and I was really scared that the spinal wouldn't take. In fact, they told me that I would need to lie down immediately after they gave me the spinal because my blood pressure would drop and they didn't want me to pass out or fall off of the table. When they told me to lie down I was having a particularly bad contraction and I was certain that the spinal had not been properly done. I continued to feel pain for approximately 3 seconds and then, nothing. I was so relieved to be without pain, but panic set in again. I would soon be giving birth to our baby girl. Charley wasn't with me. I knew that they would be able to take care of my baby, but I was so scared for her.

And then Charley walked in and was there for the birth of our baby. I cried when I saw him. He made it! Just in time! It was a beautiful moment. When they pulled Aurelia out of me, Charley snapped a quick couple of pictures and then they wisked her away to put the lines into her belly button and to get her going on the meds that she would need. I didn't even get to see her. Luckily, Charley had taken those pictures, so I could see a picture of my beautiful girl.

I don't have much memory of the next few hours. I know that they got me all stitched up and I can remember being back in the room. I know that I got very sick, coming off of the anesthesia. I had the same experience with Madison and it is not one that I am anxious to have again! I can remember kissing Maddie and my mom goodbye, as they headed back to the Ronald McDonald House for the evening.

But, I can't remember meeting Aurelia for the first time. I think that I was taken to her in the CICU (Cardiac Intensive Care Unit) in my wheelchair and I think that was able to stand up and kiss her toes, which was about all I could reach when I bent over. But I don't know when that happened. I know that they got me pumping within 4 hours after she was born and I'm not sure if I saw her before or after that happened.

No matter what, I was so excited to meet my little girl. I feel so much joy when I look at her. I feel hopeful for her future, but really, really scared too. The next few days, as you know from reading Charley's earlier posts, were a whirlwind. Surgery and recovery for Aurelia. And visits from family and friends. I was discharged from the hospital yesterday and while I was very happy to be with Madison again, it was so very painful to leave the hospital without our Aurelia.

Her heart surgery is scheduled for next Monday, October 4th. The day that she was supposed to be born. Until then, and beyond then, I will continue fighting for, praying for, and taking care of our little girl. We'll do whatever she needs to get well. It is good to know that there are so many friends and family that are doing the same.

Monday, September 27, 2010

A Difficult Night

This is a difficult night for no other reason than my daughter is sleeping alone in a hospital with no family nearby. My wife is exhausted, pumping every three hours, forced to worry about transportation in the city when I go back to work because her mother won't drive in the city, and heart torn because with her release from the SDU (Special Delivery Unit) today she no longer is near Aurelia.

Add to that the guilt of trying to balance time we spend with Madison and the needs we have to sleep and be together as a couple by ourselves and there is no way that we escape all this emotionally unscathed. I've felt such a range of emotions tonight; anger, fear, worry, sadness, happiness, exasperation, joy, happy have all shown in my face, but I think I'm tortured most by how much the decisions of those around us dictate the care of our baby.

We will do all we can to be a part of the health care team for Aurelia and to make sure she knows us as her mom and dad, but even then we operate within the confines that the doctors and others around us allow. There is a mighty frustration in that limitation and I chafe under its restriction.

Bye-Bye Arterial Line....

Hi everyone,
Just a quick mid-day update from CHOP to give you a summary of what we know today.

Aurelia has been seen by general surgery (the folks that did her work on her intestines) and they are pleased with her progress. All seems well with her recovery on that front. Similarly, the kidney folks swung by to look over the latest labs and fluid counts, etc., and they are pleased with the way her one functioning kidney is progressing and working.

They will be making a few changes to Aurelia's medication and ordering an x-ray to look at her lungs today. It's common for newborns in a NICU, and particularly among HLHS children, to experience increased breathing difficulty after a few days of life. As the body begins to grow and produce fluid that needs to be processed and passed through the body it can be hard for an HLHS baby to keep pace with the body's needs.

This is particularly true of fluid that can build up in the lungs. Aurelia has had some trouble breathing, and the increased air flow into her lungs has not really 'lightened the load' she's had to bear when it comes to her respiratory rate. She's working awfully hard to keep the fluid from her lungs and while she's not losing ground to the fluid, they really want to try and ease her struggles to breathe.

To that end they will begin administering a diuretic twice a day to help her get those fluids out. Additionally, they will increase the levels of nutrients she gets daily via her feeding lines to make sure she stays hydrated. All this will be monitored via x-ray to be sure her lungs don't begin to lose ground to the fluids.

Otherwise the only real news is that they are removing her arterial line today. This line is used to constantly monitor her blood pressure. She's been doing so well that they feel no need to keep that line present. They'll take her vitals via little baby blood pressure cuffs and if they need fluids for lab tests they can take it from the venal line.

So, today is a good day so far - as the other consults come and go we'll try to keep you posted. If we don't, it's because we really need a nap! 

Sunday, September 26, 2010

A Whirlwind Day

I'm not even sure where to begin with today's post. I know people are expecting some updates, and I know that it's not required of me to post every day, or multiple times a day, but something just compels me to expunge some of this into writing to help me sleep or relax or whatever.

Aurelia is doing well today. The funny thing is I can't even remember what I've passed on and what I haven't to everyone that wants to know about her story. It's absolutely exhausting when you're working to keep tabs on what feels like a million different departments, specialists, lab results, doctors, and changes in your baby's status. I'll try to give a comprehensive update of where Aurelia is with all her issues, hoping that I don't dull your senses with things I've said already, but give you the new information that hasn't made it out of my head yet.

Aurelia's blood clot has disappeared for now and this is a wonderful wonderful thing. It will allow her to receive blood thinners and be put on bypass for her heart surgery and it means one less course of action we have to take to correct her cardiac function. The neurologists will consult with us again tomorrow about the status of her clot (as well as any impact her enlarged #2 ventricle will have on her development, if any) and I wouldn't be surprised if they schedule her for another MRI before she goes into surgery for her heart. The neurologists will also be working with the ophthalmologists and the geneticists to determine what, if any, genetic abnormality or syndrome is at the root cause of all these troubles.

To that end, the ophthalmologists and the geneticists will likely consult tomorrow as well. They've done some preliminary work, but I wouldn't be surprised if they do more work tomorrow, or even schedule Aurelia for tests to try and get at what might be causing all these troubles. It's quite plausible that Aurelia has several defects among her chromosomes and that combined they each result in the many problems she faces. This 'syndrome' would have no name per say, but would explain why so many things are going wrong in her physical development.

The urologists consulted on Aurelia this morning and between them and the kidney specific teams they have decided to leave well enough alone and let her kidney stay inside her at the moment. It's quite possible that her kidney will die and shrivel up inside her. Either way, those kidneys are prone to infection and as a result she will be on antibiotics for her entire life (or as long as the surgical team decides to leave the kidney in place, I suppose. There is a test they will perform at about one month of age, and that will clarify the course of action  they choose to take, but that is still weeks off, of course.

Aurelia continues to recover well from her surgery the other day. She has shown no signs of internal bleeding and she has already had several bowel movements. This is key, as anytime your intestines are operated upon they often shut down for a period of time (up to a week!), but in Aurelia's case they are up and running again. They are still running suction into her stomach to ease the burden on her newly reorganized and re-routed digestive track and they will keep her off food for one week as they prepare her body for surgery. Thankfully, she has not yet been fed any food (other than nutrients through her umbilical lines) so she does not yet know what it means to be full or hungry.

Her heart surgery is scheduled for October 4 (her original due date) and it will be a modified Norwood procedure. In children with HLHS the first procedure, called a Norwood, widens the pulmonary artery, separating the main pulmonary artery from the left and right portions and joining it with the upper portion of the (typically smaller) aorta. This allows a mixture of oxygenated and non-oxygenated blood to move through the body, pumped by the one remaining good ventricle.

A man-made shunt (think of a canal connecting two existing rivers) is then installed on the subclavian artery to connect it to the pulmonary artery. This allows the single ventricle to move the non-oxygenated blood into and out of the lungs and into the body's circulatory system. I've included an image below to help make some sense of the medical jargon.

In Aurelia's case the left ventricle is still present (a victory, as in most HLHS kids the ventricle is not functioning) and her mitral valve and aortic valve are smaller, but still considered adequate for life. In most HLHS kids, these valves are not functioning, or will not function normally.

This means that Aurelia will have a more hybrid procedure, which will place a stent in the aortic bridge and a band around the enlarged pulmonary artery to prevent over-circulation to her lungs. It's also hoped that this band will help trick her heart into repairing and closing the existing hole in her heart between her right and left ventricles.

If all goes according to plan, Aurelia will do well and hopefully begin to eat and put on weight during her recovery.

To that end, I should mention that Aurelia's cleft palette is not a concern for her eating at this point, and it is so far down the list of issues that we are facing that we haven't even talked about getting a consult on what to do to fix the problem. I suppose that will simply be a bridge we cross when we get there.

Jillian and I also agreed to be part of a study at CHOP for parents. It is called, C.O.P.E. and it is designed to scaffold parents into care for their congenital heart defect baby. It's a new program designed to show parents the many similarities (and of course the differences) between a baby born prematurely or a long-term NICU baby and those babies with cardiac difficulties similar to Aurelia's. For instance, both share some very different sensory experiences and both may experience developmental delays as they age. We'll probably write more about this program soon, but we're very excited to be a part of our first study at CHOP - as parents. To us, this is one of the things that makes CHOP different; it isn't just about the patients, but also their families as they struggle to adapt to life with a congenital heart defect child.

Similarly we also have arranged for Madison to meet with a life counselor who will work with her in the coming weeks to handle the transition to having a younger sister. While often difficult enough for older siblings who have a newly arrived younger brother and sister, having a new arrival in the house that has very specific needs and requires additional attention can be even more challenging. Above all we want to be sure that Madison's emotions and experiences are validated, that no unfair expectations are placed on her, and that she is permitted to create a relationship with her little sister that is genuine, and not hurried or pushed by us or medical concerns.

It's going to be a tough road, but we'll get there!

Saturday, September 25, 2010

So what's with the name?

I had to post something about Aurelia's name, because we've had a range of responses - from those who felt it was beautiful, to those who have teased us about its unusualness, and to those who tackled it with scholarly fervor in an attempt to pronounce and uncover its origins.

Aurelia is Latin, and it is a female form of Aurelius, and its traditional translation is 'golden.' We searched for a name that would summarize just how precious and how ardently we loved our new baby, how her struggles and troubles would not lessen her but made her all the more valuable to us as her parents. The idea of her being so precious to us, so much so that we would do all we could to see her well, led us to the idea of her being 'golden' in our hearts and minds.

And so we found the name Aurelia. For pronunciation's sake, you can say it, "Aw-REHL-ya". Other pronunciations include, "Aw-RAIL-ya" or "Aw-reel-ya" or "Aw-reel-ee-ya". Jillian and I have been using the first pronunciation.

Either way, her middle name (Lee) is a family name from Jillian's side of the family. Madison's middle name, Genevieve, is a family name from my side of the family.

So there you have it - how we chose Aurelia. :)

Good afternoon!

When Aurelia arrived the other day, I did not realize one of the side effects of having a daughter in the CICU (cardiac intensive care unit) would be time flying. I can't seem to keep track of the hours and minutes and spend enough time with her, Jillian, Madison, or even by myself to simply use the bathroom without looking up to see the clock hands spinning at some astronomical rate.

Grandma and Grandpa Dittrich have headed home after their first visit with our family, and Grandpa DeAlessio wasn't far behind. After an uneventful evening at the Ronald McDonald House in what is one of western culture's greatest cesspools, Camden, NJ, we got back to the hospital to find Aurelia spent a quiet evening of her own. Her breathing, while labored in the evening, had returned to normal, her pain level seemed moderate and well managed, and her disposition quiet and reserved. Jillian and I like to think she's saving her strength for the big battle ahead.

It's hard for us to think that she's already had one surgery and in only a few days will be on bypass and having another.

News today has, so far, been rather mundane. Urology consulted with the team this morning and has decided to postpone any action for the time being on her kidney. She'll be administered antibiotics for the next month in an effort to stave off infection in her multi-cystic kidney. Kidneys of her sort are prone to infection and infections, to a newborn who recently had heart surgery (or soon will), are much feared. It seems that there is a test the urology folks want to run, but Aurelia needs to be a bit older and stronger for the test to be successful.

Otherwise, the only other real news to report is that in an ultrasound last evening the team, led by the fantastic Dr. Naim, uncovered a malformation of her uterus. While this poses no threat to her now, or when she hits puberty and begins menstruating, or even when she (if she) chooses to become pregnant, it will impact the delivery, baby's positioning, and perhaps development. All of these things are manageable, however, and will just be added to her medical file.

On a related note - I think I'm going to need a U-haul to cart Aurelia's medical records with me from place to place!

I'm sure Jillian or I will post more today as things unfold (we've had several other meetings, etc., today), and as always, thank you for all your love and support.

Friday, September 24, 2010

Another step in the long march!

I couldn't resist the social studies innuendo in the title - for our readers who don't know, I teach social studies and the Long March is a Mao Zedong/Communist China reference. Anyway.

Aurelia returned from her surgery and her MRI and brought good news with her; the blood clot in her brain that had the cardiologists, surgeons, and us worried appears to have disappeared on its own. This is very unexpected. The tests done yesterday indicated that the clot might not only be there, but that bleeding may have very recently taken place. We fully expected for the news to come back that it would be several weeks until her heart surgery, because the clot would need to be disintegrated before Aurelia could be put on bypass for her heart operation.

When Dr. Ince (pronounced Inja, like 'in' & the 'ja' sound at the end of 'ninja') came into our room to tell us that she's back and that the clot appears to no longer be present we about jumped for joy - even recently c-sectioned mama Dittrich almost leaped off the bed.

Currently Aurelia is being sedated with some pain medicine to help calm her after her surgery. She's still receiving some oxygen (and will for a bit of the night), but by morning and for the next few days she should be on the mend.

We know this is a life-long road that will be filled with peaks and valleys, but after a rough day one it feels good to have a day where things come out sunny.

Successful Surgery

Aurelia has emerged from her surgery successfully. They repaired the blockage in her duodenum by bypassing the affected section of her intestine. They also re-arranged the way her intestines lay inside her (to prevent unnatural folding and loss of blood flow to the intestines) and removed her appendix.

Amazingly, her appendix was roughly the size of the lead visible on a sharpened pencil. Because of the abnormal positioning of her intestines her appendix was awkwardly located, making future surgery on possible appendicitis very difficult. To prevent that problem they removed the appendix today.

The surgery should correct her digestive issues, and it may last her entire life. There is a chance she'll outgrow the bypass and they'll have to go back in to rearrange and redo the work completed today.

At the moment she is in the MRI machine and they are looking at her clot. The anesthesiologist said that she went down well and the surgeon, Dr. Collins, said she did wonderfully throughout the procedure.

We will post more in a bit - Madison wants some attention at the moment, so I must be off! Thank you to everyone for their love!

Pictures of Aurelia

Updates are coming

Hi everyone,
Thank you for joining us on our journey - we will use this as a clearing house for all our updates about Aurelia. More updates will be coming soon!