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.

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

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!

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."

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!

An NG or a NJ or an ABC to your XYZ

Aurelia goes in for a procedure in just a little bit. the folks down in IR (Interventionary Radiology) will be putting a feeding tube into Aurelia that runs not just into her stomach but beyond it and her duodenum and leaving it smack dab in her intestines.

Currently, Aurelia's tube ends in her stomach and she receives bolus feeds, or feeds every three hours. With this new NJ tube she will be fed 24 hours a day at a very small rate. The hope is that the NJ will lessen her acid reflux and thereby improve her ability to breathe.

It sounds silly, but I worry more about this than I do for her potentially coming heart catheter (done at the end of the week most likely. Maybe it is the immediacy of the procedure or maybe it's my own paranoia that something so small and 'routine' could end up disastrous. Either way your thoughts, prayers, and well wishes are welcome!

A Half-Life

There is a strange sort of half life in the hospital. You can see it in the eyes of parents and more so in the eyes of older patients. It's hard to describe. I suppose it looks like exhaustion to most people, but there is something more insidious about how the hospital treats you.

There is a constant desperation underneath the dead eyes and sallow cheeks. With our tousled hair we aren't zombies, but we are definitely living in two worlds. We are filled with hope, it's true, but we also dread the next crisis, beeping monitor, or upset cry. Even sadder to us as time passes is our desensitization to the monitors and beeps and warnings going off around us during the day. This only happens at your most tired and vulnerable moments when you really can't think about much of anything other than the six inches in front of your face.

Usually during this time someone will come to your room and rouse you from this hospital induced stupor and tell you about the result of some test or some other test to come or some medication adjustment or the current status of the doctors on rounds. Very rarely your child will deliver good news herself, through a smile or a happy chortle, or even a boisterous bowel movement (again with the poop!). Rebounding from these truly transcendental, but empty, moments is odd. You see parents and patients alike look around with dreamy expressions, and some reach for a cold hospital drink from one of those universally bland and unappealing opaque ribbed plastic cups with an aluminum foil 'cap.'

Some say a word or two to their partner, others take a step or two from their room or pod, and many turn to their nurse for comfort and support in the form of good news or a silent smile. You recognize all these emotions and feelings in the faces around you and you almost push yourself to ignore them rather than pity them, because if you let pity exert itself for them then you begin to let it feed on your sadness as well.

Sadness here isn't really about tears, so pity doesn't usually take the form of someone hugging you or holding you tight (though that is often what we really need) when they visit the NICU, or CICU, or CCU.  Instead people see these babies wired to machines and struggling to breathe or they watch us practice putting tubes down the noses of our babies and they say vague self-insulating platitudes like, 'It will be OK' or 'Don't worry, she's in good hands.'

You register these things in the back of your mind and you smile at the appropriate times and nod at the niceties but you really just feel the strange hospital sadness all the more. Your mind whispers things like, 'She is NOT ok' and 'I KNOW she is in good hands, but what the hell does that have to do with anything?!?' and you dismiss these thoughts quickly because you know that reality is not what most visitors want to see or talk about.

And that's ok, because pity here in these wards is about the depression we feel as parents of a CICU or NICU baby; our days drag out in marathons of emotional and spiritual endurance and we silently pity each other and you almost feel yourself giving whatever will you have left out over to the parents and people around you. Pity here is hoping for others, that if you can will them well, or watch them survive then you know you can survive your own sadness and your own race against whatever is hurting your loved one.

In some ways the pity we feel for ourselves and each other leads to hope that together everyone makes it through. As families pack up and leave the hospital or the Ronald McDonald House you know that some made it and they are leaving with their child and new time together as a family. You know too that some have left their children behind, or that they will meet them again in their hometown or home state for one final goodbye, but you can see them walk out with their heads high and their arms around one another knowing that they gave all they could and used all the willpower we and others gave them, and that in this case their best was simply not enough. And as horrifying a fact that is, it is still enough for families to make it together.

All of that said the life we lead here isn't natural. I don't know what to make of how I spend my time here at CHOP. I'm not a teacher here and I could give a dog's fart about anything outside these walls, but I have to still make sub plans and come up with lessons that I don't teach and don't assess and really don't even think about until 2:35 each day when I wonder how many, if any, students misbehaved.

I have two daughters here, one I see only part of the time and the other exists in a strange world of tubes and wires and pumps and blenders that is undoubtedly foreign to me. Both of my girls are in some ways removed from me as a father. It's hard and a struggle to find a pattern here as a dad, for either girl, and just when I feel like I'm hitting a stride and improving everyone's quality of life I leave and let all that progress slip into the filtered air ducts of CHOP and the CCU.

Or at least, that's what it feels like when the hospital half-life has you in its grips. During moments when you look into your newborn's eyes, or splash in the water with your 19 month old at the Please Touch museum, you know that you always make a difference and that love lingers longer than the pain of separation.

See that's the thing about hospital half-life. And maybe it's what makes it so punishing on everyone here - you don't control your future or the future of your loved ones as much as you can on the outside. Your life goes and stops on the words and machines of other people. It's almost like the tortured half-life you see in people who live in airports, shuffling from city to city, dependent on professionals who move people through the air safely and (hopefully) quickly.

Folks here yearn for an end to living on someone else's schedule and by someone else's words and medications and tests. We trudge through all of this day in and day out to get back home to our friends and loved ones so that we can hold hands outside the hospital and hug each other knowing that what we've made is a family stronger for the struggle and one that still believes in hope and miracles and the power of real human love. It's not a bad thing, this hospital half-life, it's just a quasi state of existence that's hard to understand unless you've lived it yourself. And I think that's a good thing.

A whirlwind of thoughts, feelings, and happenings

We know it has been some time since our last post, but things in the Cardiac Care Unit have kept us on our toes. In this post we hope to give you an update on all of Aurelia's conditions, the plans we have to help her, and some of the other goings on involving our little family as we continue our pilgrimage here at CHOP.

This week has been a tale of competing ideas. Our primary attending prior to yesterday's shift change, Dr. O'Connor, kept a very close eye on Aurelia's breathing, hoping to take her off of room air flow (2 liters) by the end of this weekend. There has been a good deal of concern with Aurelia's breathing. Typically, cardiac kids her age are operating their respiratory system unassisted, but Aurelia is a bit different and so we are trying to figure out why she needs flow assistance when it comes to breathing.

Similarly, Aurelia's progress with bottle feeding is also a concern. While cardiac infants often struggle to get started on the bottle, there is a good chance of success to not only resume bottle feeding, but eventually transition back to breast feeds. Aurelia had been taking about 5 ml on the bottle during her feeds, but she wasn't making much progress otherwise and was having some trouble with acid reflux. As a precaution Dr. O'Connor called in the specialists from Ear/Nose/Throat to examine her esophagus. It turns out that Aurelia's streak as a great gambler continues. She once again came up triple 7's when betting on her vocal cords being paralyzed during heart surgery. E/N/T found that her left vocal cord came out paralyzed and this most definitely would impact any attempts to bottle feed (as would her cleft palette). This can also make breathing a bit more difficult as well.

Even with these small changes the team decided not to proceed with the heart catheter that had been scheduled for either Friday or Monday. Dr. O'Connor felt that the data on heart pressure wouldn't really give us any more information that would be useful regarding her breathing, particularly since her echo-cardiograms came back so excellent both last Wednesday and Friday.

The plan would be to use this weekend to wean Aurelia off the room air flow and begin to talk about discharge sometime early next week, getting us home by the middle of the week. Jillian started talking to our case manager to arrange for home care and equipment use for Aurelia's journey home. She arranged at least two to three home nurse visits and set up our rental of a feeding pump. She also will make sure we have a family meetings sometime early next week to talk with all of the members of Aurelia's team to be sure that we have plans in place for all of Aurelia's problems.

A family meeting to coordinate care is a real concern for us as we move closer and closer to coming home. The details are getting so numerous that it is hard to track them and the big picture at the same time. For instance, Aurelia's feeds here are supplemented with 22 calories of enfamil formula, which is something that we have to demonstrate proficiency in before leaving. We also had to take an NG tube class and a CPR class yesterday and get briefed on how to use the pump. Details like these are important but begin to block out how it all fits into the big picture, particularly when you add in the seven medicines she gets, the different timetables, and cleaning procedures for all the equipment.

All of this became a bit more complicated when Aurelia exhibited respiratory distress Friday night into Saturday. The result was bumping her back to 2 liters of air flow (she had worked herself down to 1 liter!) and avoid weaning her off before discharge The plan to discharge now included her going home with oxygen and us leaving on Monday (according to our nurse). Leaving Monday?!?!?!  When we heard this yesterday, we were stunned.

Needless to say, our nurse giving us this information greatly distressed everyone. We had no training on using oxygen tanks at home, or as portable devices, we didn't even know if our case manager had or could make arrangements for all the needed equipment before discharge on Monday! And what about our family meeting? And was there a class we needed to take? And we hadn't even inserted her feeding tube on our own, OR done 24 hour care! And what about the urology test that was to come up in a week or two? And what was the plan with plastics? Or with Occupational Therapy and Speech Therapy?

Complicating issues was a shift change in attending doctors. Dr. O'Connor went off as our primary and Dr. Vetter came on; we did not know what to think about this change because it seemed that once again when the weekend came with its new doctors and nurses the pace to have us discharged quickened. We felt genuinely overwhelmed and under-prepared and upset that Aurelia would be leaving here on Monday. We felt a bit frantic, I think, yesterday afternoon when Aurelia's acid reflux took a hard toll on her. She had several spit up incidents, needed a lot of suction, and cried her small vocal cord paralyzed cry for most of the afternoon. So sad, that cry.

Thankfully, when Dr. Vetter came to us she put all our fears at ease. She introduced herself and prompted me to ask all the questions I had about Aurelia's care. I started by saying how concerned I was that we didn't know why she was breathing so hard and needing room air flow to stay oxygenated, and how that might impact the plan for us to discharge on Monday.

Dr. Vetter's reaction was fabulous. She held up her hand politely, indicating for me to stop, and said, "Well let me put that rumor to rest, because I don't know where you heard such a thing. There is no way this little girl is going home on oxygen when I don't know why she's breathing so hard. I've called pulmonary for a consult and they'll be stopping by and taking some x-rays tomorrow. She's not going home anytime soon."

I about cheered and kissed the woman. She told us that Aurelia was an excellent candidate for a program that kept her as an outpatient here so that moving forward we could coordinate all her care under one umbrella and be sure that we need not have many multiple visits that complicated communication between doctors and the quality of Aurelia's care. She said that she really felt the need for a family meeting and would be pushing the case manager to set one up when she came in on Monday. Additionally, we stopped bottle feeds for the foreseeable future until we know why Aurelia's having such trouble breathing, and what the progress is with her vocal cord recovering from its paralysis.

So, in brief, that's where we are - a few other things in list form to keep you all in the loop.

• If pulmonary's consult doesn't yield anything, then we'll likely have the heart catheter sometime in the upcoming week. Pulmonary did a cursory examination this morning and will present to the attending there after the x-ray is taken. We have not yet heard the result of Aurelia's consult.Dr. Svwast, our lead cardiologist is now contributing to that discussion.
• Our case manager will be contacting 'complex scheduling' and arranging the family meeting starting tomorrow.
• Aurelia's medications include a calcium supplement, a chloride supplement (now and again), prilosec and zantac, amoxicillin, and lasix. She receives a number of them throughout the day, some multiple times a day, some with feeds, some without. They are hoping to increase her reflux medication as one possible solution to her reflux problem. Another is extending the feeding tube beyond the stomach sphincter. 
• We haven't heard anything in a bit from urology or plastics. Expect new updates later this week. 
• While we are upset about the lack of bottle feeding, we are glad that we at least have a plan in place to help Aurelia's vocal cord issues as much as we can.
• They are drawing labs on Aurelia daily, looking for low calcium and chloride. She's been tested twice for a rhinovirus (cold) that has been going around the hospital. So far, she's come up clean each time. 
• She has the cutest little baby butt ever. EVER!

That's all we have for now, and as this post is wicked long we'll call it a day. More pictures and maybe some video coming soon.

Little A ~ some new pictures

Aurelia's new bed in the Cardiac Care Unit is much larger and allows space for ALL of her special friends to be in bed too!

Here she is with the giraffe lovey that Madison picked out for her baby sister. We each spent nights sleeping with this little blanket for quite some time before Aurelia was born. We wanted to have our scent and the scent of "home" on it so that our little one would recognize home and family. She seems to like this one, so I hope that our plan works!

Daddy and his new baby girl.

Check out the hair bow! Her nurses in the CICU dresser her up in the outfit below and added the "pretty" to her hair. It was a nice surprise to see her all dolled up when I went to visit one day last week.

Her first outfit was a onesie from the hospital! She really didn't mind it too much. She's just upset because she just had her diaper changed and as much as she hates having a wet diaper, she REALLY hates being naked!! Very unlike her sister in that respect!

Both my girls! This was taken shortly after the move to the CCU. It was really great to hold both of them together.

Wednesday, October 13th

Today was my due date, hard to imagine since Aurelia is nearly 3 weeks old! The days seem to go very quickly and very slowly at the same time. I continue to juggle my time between both girls and to feel enormous amounts of guilt when I am not with one of them. Since Madison still has a cold, I haven't been able to bring her to the hospital this week. It has been tough because I haven't been spending enough time with her. I want to be at the hospital as much as possible during the day, so that I am there when the various doctors and specialists stop in to see Aurelia. But, I want to give Maddie her "mama time" too. My plan today was to be at the hospital for a good part of the day. The Speech folks were planning to do a bottle feed at noon and I wanted to be present for that, so I told my mom that I'd be back sometime in the afternoon and that we could take Maddie to The Please Touch Museum, if she was rested and seemed to be interested in getting out of the house (which I'm sure my mom was ready for!). The plan changed a bit when I got to the hospital and found out that Speech would be doing the 3 pm feed instead of the noon one as planned. I headed back to the house and picked up mom and Maddie and headed for the museum. We had a great morning. There are all kinds of fun exhibits and Madison really had a fantastic time. I think that Charley and I will take Maddie there again over the weekend. It will be good to have some family time! Here are a few pictures from the visit to the museum.

Monday, October 11th

It has been many days since we have posted a real update and I apologize ahead of time because this won't be a long post, but I wanted to get something up for those of you that are still following Aurelia's story. The biggest news is that Aurelia was moved on Saturday out of the Cardiac Intensive Care Unit to the Cardiac Care Unit. She isn't in need of as much "intensive" care, so she was able to go to the step-down unit. This, as all of our doctors and nurses have reminded us, is a good thing. This means that she is one step closer to going home. Good, but scary. Since we've been in the CCU, which is just across the way from the CICU, we've felt overwhelmed and a little scared about Aurelia's care.

Charley and I both know that Aurelia is in the best place possible and that this move to the CCU is a good thing, but because she was moved on the weekend, we feel like it is taking her new team a long time to get to know her and her case. We miss our nurses and doctors from the CICU! We also felt like our move to the CCU put us in a marathon sprint for the finishing line (getting her out the door!), and we don't feel at all ready for that.

Soon after her move to the CCU, we were told that she would be going home with a feeding tube and that Charley and I had to take an NG class (to learn how to insert the tube, if necessary, and to give her feeds and medications through the tube). We were both under the impression that we'd be working with the Speech Department to get her to take a bottle and to hopefully breastfeed one day. It was a big surprise to learn that the feeding tube wouldn't be coming out prior to our departure. Again, we felt like they were moving really fast and it is pretty overwhelming.

The other thing that has been frustrating is the concern about her oxygen levels. When we left the CICU, she was on room air. They were trying to wean her down to 21%, but she wasn't handling it well. They played around with the percentages and found that she was happiest with it between 25-30%. Since we've been in the CCU, they have continued to play around with her oxygen and to me, it feels like they are rushing to get her off of the oxygen. It is just another one of those hurdles that we are barrelling toward (and not necessarily ready to jump over!). Everytime we check in, the plan has changed and it is frustrating.

I certainly don't intend for this entry to be a big complaint, so I will share some of the benefits to being in the CCU. We were also given more opportunities to participate in her care - giving her a bath, changing the sheets on her bed, continuing to change diapers and that sort of thing. We can also hold her whenever we'd like. Charley and I have learned some of her cues and know that when she's cranky, she prefers to be patted gently while in her crib. It has been fun getting to know her a bit more. This morning Charley and I gave her a bath and then worked together to calm her down after she had an x-ray taken. It was nice because we felt like we were parenting our daughter and even though she is still surrounded by machines, it felt like we were providing the love and care that she needed. And, the bonus - we actually settled her down very quickly, which made us both feel really good.

In order to ease some of our concerns about the lightning pace that we felt we were on, Charley and I really wanted to sit down with one of the CCU attendings and ask a ton of questions concerning all of the various anomolies that Aurelia has. What types of things should we look for/be concerned about in the future for her heart, kidney, intestines, cleft palate, genetics, everything? We wanted to know about future care, follow-up care, and that sort of thing. I had the opportunity to talk with Dr, O'Connor, one of the attendings, but since he is just getting to know Aurelia, I decided not to bombard him with all of the questions (of which I didn't think he'd be able to answer at this time). I did, however, give him a heads up and basically said - get to know her case and then we can talk, because I have a bunch of questions that we need answered. Hopefully, in a day or two, we can start getting answers to some of those questions.

As much of our time here has been, this weekend was full of highs and lows. We learned that another family (who we knew from the RMH in Camden and moved to the Philly house shortly after us) lost their baby girl (also with HLHS) over the weekend. We were all reminded of how fragile these babies and their situations are. It was a heart-wrenching loss for a really nice family. On the up side of things, we had a nice (quick) visit with my dad and Uncle Mark, who drove down from CT for the day on Saturday. For me, another high was that I got to sleep in Aurelia's room last night. Since Charley was here with Madison (and my mom), I felt like I could stay the night at the hospital. In the CICU, sleeping cribside just isn't possible, so it was nice to be close to my baby all night long.

The other thing that was tough about Aurelia's first night in the CCU was that she was all alone. A tiny little baby in a big old crib, all by herself. I cried when we left because I was worried that no one would know if she was upset or sad or needed anything. After spending the night there with her, I feel much better about that situation! She is watched over and well-attended. Also, Aurelia does have a roommate now, a little boy named Hayden. He has 3 sisters, a mom and dad, and 2 grandparents. All of whom were visiting this evening when I went to spend some quiet time with Aurelia. The majority of my quiet visit was disturbed with many sounds of "Shhhhhhhhhhhhh..." from the mom, trying to quiet her girls down (even though the shushing was probably worse than the noise that the girls were making!). I had a nice visit with Aurelia, in spite of the shushing!

Our poor little Madison has a bit of cold right now, so we've decided to keep her away from the hospital for now. It is tough because I want Maddie to see her sister, but I don't want to chance Aurelia picking up any kind of respiratory illness. That is the last thing that she needs! For now, I'm trying to figure out how to juggle my time so that I'm spending enough time with both girls. Today went pretty well, so hopefully that trend will continue tomorrow!

I am exhausted so I am going to try to get to bed at a reasonable time. Thanks for reading and have a great night!

Love,
Jillian

A quick update from crib-side

It has been a difficult few days for me as I adjust to all the changes that have unfolded at what feels like lightning pace. There are many updates to share and thoughts and feelings to get out on 'paper' but typing them on a smartphone isnt the best way to compose a post. I'll try and get something more substantial up later today, but I wanted any followers to know that Aurelia is a champ and doing just fine. More rto come soon!

Friday, October 8th

It was a relatively uneventful sort of day, which was actually quite nice! Madison had a bit of a runny nose yesterday and this morning, so I thought that it would be best to be safe and leave her at the Ronald McDonald House with my mom. I had breakfast with them and then left them to play in the playroom while I headed off to CHOP to spend some time with Aurelia. When I arrived it was time to pump, so I did that before I went to see our girl.

I got to her cribside around 9:15 and met with her nurse who informed me that I had just missed rounds. She caught me up though. They decided to start bolus feeds (every 3 hours) today. They had been giving her continuous feeds of about 18 mls an hour, which is technically full feeds). They wanted to put her on more of a schedule, so she would be getting the full 54 mls every 3 hours, at 12, 3, 6, and 9. Her first bolus feed was due to start at noon, so I planned to meet with Speech around 11:30. At that point, she was off of her continuous feeds for an hour and a half and the hope was that she would be hungry and we could try to feed her with a bottle (as opposed to her feeding tube, which is where she is getting all of her feeds currently). The first bottle feed went okay. She has the ability to suck, but because of her cleft palate, she can't press her tongue to the roof of her mouth and have it create the suction/pressure that one needs to draw the milk out of a regular bottle. I have some special bottles that we are going to use and there are other options, if these don't work. She took in a total of 1 ml via bottle and enjoyed the rest of her feed through her feeding tube! Because the Speech folks are only there Monday-Friday, we're going to wait until Monday to try again. In the mean time, I'm going to try some non-nutrative breast time while she's getting her feeds and hope that it will give her a sense of what a "normal" feed can be like. Having that skin-to-skin time will be really special and I'm looking forward to it!

I also met with someone from Occupational Therapy today who gave me some information about how we should handle Aurelia for the first 2-6 weeks post-op. For the first 2 weeks, she shouldn't have any tummy time (not something I was even considering!!) and for the first 6 weeks, we shouldn't be picking her up under her arms or sitting her up in a sitting position (again, I don't think that either of us were planning on doing that!). When we pick her up, we have to slide one arm under her shoulders and the other gets scooped under her buns. This will ease any discomfort that she has in her chest. The OT folks also gave me some information on scar massage, which we can start at six weeks post-op, as long as the incision has healed completly. There's not much to it - just small circular motions with our thumbs, going from top to bottom - but it will feel nice to Aurelia and it will help her scar become smaller. We can add some lotion or some Vitamin E, so it will be a nice experience for her, I hope. I wouldn't be surprised if that becomes a task that Madison wants to do for the baby!

The other big news that I got today is that it is likely that Aurelia will move out of the CICU and into the CCU tomorrow. That's right - moving on "up" to the step-down unit! She doesn't have too many of those Intensive Care hook-ups anymore, so she may be ready to move to the regular Cardiac Care Unit. Like yesterday, I was really surprised with how quickly things are happening. I asked her nurse about anticipated length of stay in the CCU (because home is the next step!) and she said anywhere from a couple of days to a couple of weeks. Because of her cleft palate and the expected feeding issues, it is likely that her stay will be closer to a couple of weeks because we want to make sure that she is capable of eating on her own.

After my nice morning with Aurelia, I picked up my mom and Maddie and we headed for the Please Touch Museum. I thought that it would be nice for Maddie to have some special time doing something fun. Long story short, we didn't make it there. The directions that we had were incorrect and we got pretty lost. Luckily, I pulled out my GPS (thank you, Charley!!) and we got ourselves to the hospital instead. We'll try to get to the museum over the weekend instead! Maddie had a quick visit with her sister and got so excited to see that Aurelia had a "pretty" in her hair (her nurses had put her in a purple onesie and had placed a tiny pink bow in her hair). She looked pretty darn adorable and Maddie was just tickled! We visited for a while and then headed back to the Ronald McDonald House for dinner. I got Madison her bath and then headed back to the hospital to spend a bit more time with Aurelia. I brought my computer and we Skyped with Charley for a while! It was great that he got to spend some time with Aurelia. Our nurse for the evening, Mercedes, even participated in the Skype session and answered some of Charley's questions about how Aurelia was doing. It was really nice to spend that time together, even if it was over the computer!

And now I am back at the Ronald McDonald House. It is very late and I am quite tired. I know that I haven't been getting enough sleep, but I don't usually feel tired during the day. It often hits me right after dinner, when it is time to settle Madison down for bed. Sometimes that makes settling her down even harder. I just want to cuddle up and go to sleep - shouldn't she want to do that too? No, she likes to have stories and then she likes to lay on my bed while I pat her back for a while. Eventually she falls asleep, but sometimes it takes a really long time! Tonight, I skipped out and let my mom put her to bed. I felt really guilty about leaving her, but sometimes I need a break from it. I never thought that I would say that and I'm not sure that I like it, but I guess that is part of being a mom to 2 children. You do everything to can to be there for both of them, but sometimes one child needs you a bit more.

Even though I was so tired tonight, I'm really glad that I went back to the hospital. It was fun being there when there weren't too many other parents around. The pod was quiet and I could quietly enjoy time with my daughter and listen to the hub-bub of the nurses. They had the Phillies website up and there were constant updates about how the game was progressing. They were also working on putting together a take-out order for most of my visit. I think that the final order was placed around 9:30 and there were probably 20 different things that were ordered! It reminded me of the show Scrubs, which I adored. I tried to pick out nurses and doctors and orderlies who reminded me of various characters from the show and I told Aurelia all about it. She seems to like it when I talk to her because she coos and sometimes grins. Maybe it is gas, but I like to think that she enjoys hearing my stories!

Tomorrow Charley will be back and I'm sure that one of us will have another update to post. Can't wait to see him! And I think that both girls will be thrilled to have their daddy back too! For now, good night!

Pictures from September

Here is a slide show of some pictures from September. Enjoy!

A busy day for a two-week old!

It is not yet 3 pm and our girl has had yet another big day! She was doing very well with her feeds, so they have bumped her up to 18 mls an hour. She is on hourly/continuous feeds currently, but by tomorrow she should be put on a 3-hour schedule. I am currently waiting to see someone from the Speech Department to talk about oral feeds and the possibilities of breast feeding. Because of her cleft palette, it is possible that she will never be able to breast feed. We are going to do our best though, and even if she can't actually nurse, she will get plenty of non-nutritive breast time.

I arrived here this morning around 8:30 and met with her nurse for the day, Tommy. I had just missed rounds, but Tommy told me about all of the things that would be happening today - she had both of the lines in her belly button removed and they were about to remove her RA line and the pacing wires that go into her heart. They allowed me to stay for the procedure, which was quick and relatively uneventful. Our girl is a bleeder though and bled from both locations for quite a while. While it wasn't a large amount of blood, it was fairly continuous, so the nurses were mildly concerned. Dr. Ince came over to check on her throughout the morning and both locations eventually clotted and stopped bleeding.

The dressing on her chest had been removed yesterday and she started to bleed (though very very slightly) from the lowest spot on the incision again. The doctors still believe that it is mostly fluid mixed with a bit of blood and that her body is simply "sponging" it out. Again, they are not overly concerned. We do have to be careful when we change her or when she gets upset because she tenses up her body and as a result she squeezes her chest and the fluid/blood mixture will "ooze" out of her. Tommy placed some secured dressings on it and hopefully that will help it clot up and stop oozing.

Speaking of changing, she had 2 poops last night and a 3rd one while I was with her. Honestly, I have never been so excited about poop! In fact, she had the most boisterous diaper-filling that I have heard in quite some time. I was laughing in the CICU! Laughing at my tiny daughter's ginormous toots. It made me remember those first few weeks with Madison and how surprised Charley and I were about how something so small could produce something so disgusting! It made me really happy though to be experiencing the same thing with Aurelia. It is starting to change from the black meconium stools that babies have when they are first born into something more like baby poop. This can be attributed to the breast milk that she is now getting in her body. In fact, she has been taken off of all of the nutrients that she was being fed since she was born. Her current diet consists solely of breast milk, which makes Mama really happy! All that pumping is well worth it!

So, to re-cap, our daughter currently has a feeding tube (in her nose), a nasal cannula that is giving her lungs a little boost with room air (it was at 50% last time I checked), an IV in her right foot, and a blood pressure cuff on her left ankle. She has a wire taped onto her left hand. That measures her pulse and oxygen levels. She has 3 additional leads on her chest and belly, keeping track of her heart beat and bp. That's about it. Other than the feeding tube and IV, there isn't anything inserted into her body. This is huge compared to just 2 days ago when she had a breathing tube, a chest tube, 2 belly button lines, pacing wires into her heart, an RA line, and everything else listed above. I will say that it has been pretty overwhelming knowing that my daughter had open-heart surgery just 3 days ago and she is now minimally "wired." I kept thinking, "Aren't they going a little fast? Should they be removing all of these things so soon?" I felt very reassured when Dr. Svast (one of the head Cardiology folks) stopped by and said that it was great that they were removing everything because there would be a lesser chance of infection.

Once again, I'm really proud of our little girl. She handled everything beautifully today. She even let Mama give her a bit of a sponge bath, to clean up the dried blood and some of the orange dye that remained from her surgery. After the bath, she got bundled up like a burrito and then spent a few minutes in Mama's arms. I was so excited to get to hold her again. I sang to her and cuddled with her while she made some sweet baby cooing sounds. I fell in love with her during those moments and can't wait to hold her again.

One thing about the CICU that is frustrating, but completely understandable, is that when another baby is being admitted into a pod or coming back from surgery, all non-medical folks get booted from the room for at least 30 minutes (usually longer). I appreciated it when Aurelia came back from surgery and Charley and I got to spend a few minutes with her before others were allowed back in, so I understand that this is necessary. But, I was enjoying my sweet baby-holding time and had to cut it quite short! Luckily, I'll be heading back in shortly and will get to have my girl in my arms again. I will try to get some pictures too and add those later on this evening.

Jillian's Turn, October 6th - 12 days old

Here we are, two days after I was originally scheduled to deliver Aurelia. In fact, she is now twelve days old and it is two days after her second surgery. My post this evening is kind of a mish-mash of various feelings surrounding the surgery, post-surgery, how Madison is doing, the CHD community, and my sadness over the distance that Charley and I must endure for a few days each week.

To start, open heart surgery is a scary thing, no matter what age. But an infant, less than 8 pounds, with additional things that are wrong with her tiny body - now that is damn frightening. Monday, as Charley wrote, was a tough day for us. The early morning was calm and somewhat serene as we enjoyed a bit of quiet time with our little girl. The anticipation of what was to come almost got in the way of our peaceful time together. And when the hustle and bustle of surgery prep started, the day turned into a very long wait.

Finally, after many hours with many updates, we were allowed to see our daughter. Those first few moments with her were a mixture of emotions and questions. Our nurse walked us through each tube and stitch on her body, explaining what each one was doing and how long it would remain in place. I was surprised with how puffy our girl looked, but with all of the extra fluid that was pumped into her body, this should not have been a surprise. The breathing tube that was inserted into her nose made her face look a bit distorted. This, on top of the puffiness, made us decide that we wouldn't bring Madison in to see her sister until that tube was removed. So far Madison has been interested in her baby sister and we didn't want to frighten her.

When that reunion took place, just a day later, Madison was thrilled to see her sister again and didn't bat an eyelash at the large guaze dressing that hid her incision. Instead, Maddie wanted to "boop" Aurelia's nose and to play "This Little Piggy" on her toes. It was very dear and made me so proud of my older daughter. I know that kids are relsilient and that they are very good at adapting to new situations, but Maddie really has been through quite a bit over the last month or so. She hasn't been home since the middle of September. She has been sleeping in a Pack 'N Play. Most of her toys and books are still at home. She hasn't seen her kitty cats. She spends part of each day at a hospital and the other part of her day at a Ronald McDonald House in a city that she has never visited. She has a new sister and she seems to be tickled by her. Yes, I am very proud of how well our Madison has handled all of these changes.

I recently posted something on Facebook and I wanted to clarify for anyone who reads my posts and was confused. I posted that the CHD community has lost 9 precious babies in the last week or so. I am "friends" on Facebook with a bunch of folks who have or have lost children to Congenital Heart Defects. I also follow a few blogs of other parents who have children with CHDs, particularly HLHS. The "community" that I wrote about in my Facebook status referred to the families (and by extension, those that they know) that I have friended on Facebook. I don't actually know any of them, but their children and their struggles are dear to me and hearing about each loss has been difficult this week in particular. There are many victories that I hear about too and right now our little Aurelia seems to be one of those victories among all of the losses. One of those golden stories that will, hopefully, allow us all to see the light in all of the darkness that these other losses has caused.

Speaking of community, I will say that staying at the Ronald McDonald House has been an amazing community for us. We started out at the house in Camden and when we moved here to Philly, there were several families that had also relocated here. And there have been quite a few since. We have a community here too. In fact, many of the families here have children with HLHS or other CHDs. I frequently see several of the other families in the CICU when I am with Aurelia. It is nice to simply say "hi" and to know that those folks know what you are going through. I pray for our little girl each night (and many times throughout the day) and I always include the little ones that share her pod in the CICU and the little ones of the other families that we've gotten to know. We are all here because we need to be and it is nice to have this community as well. We share dinners together and have simple conversations - how's your baby doing today? - that are anything but simple. It is nice to have others who are in the same place as you, just hoping that their child will be okay.

Charley headed back to G'burg today, which was sad for all of us. I have hospital visits and Madison to keep me busy, but I would much rather be doing those things with Charley. I am sure that he's having a tough time being at home without any of us there with him. I can imagine that the house feels empty and quiet without Madison's footsteps or dancing toes twirling throughout the living room. I am happy that we will all be together again on Saturday, but until then, the being "alone" sucks.

Finally for tonight, I want to say thank you to all of you who are reading this blog. Charley has said it before, but we both truly appreciate the love and support that you are all giving to us. We enjoy reading one another comments from friends or acquaintances or to try to figure out how we know some of you readers. It helps to know that there are so many of your out there, sharing in Aurelia's journey. Our little girl is loved by so many people and that gives us the strength to continue to help her overcome the odds. Thank you for checking in!

The pictures above are from today. Many of you have been asking for new pictures and I believe that Charley is working on getting some others inserted into previous posts. We have lots of pictures, but we've been lax about getting them on here! Here are a few for now. More will certainly be added soon!

Lots of Love,
Jillian

So where are we now?

After the long journey of the past couple days there are so many things to write about and so many improvements and challenges that time has slipped away from us and this update is coming essentially a day late.
Because of all that's gone on, I think I'm going to take a less elegant approach to this post and provide a snapshot via list of Aurelia's journey and current situation.

Yesterday, day one of Aurelia's recovery, featured some great strides and a few setbacks, but all in all it was a very good day.
- Aurelia's incision looked good and the amount of blood coming from her chest cavity fell so much that the doctor's removed her drainage tube.
- Similarly, her blood-gas readings progressed to such a point that the doctors removed both her breathing tube (taking her off the respirator) and her sump (leaving her intestines to process all the fluid/nutrients in her stomach.
- In preparation for feedings later in the day the team installed a feeding tube through her left nostril. As a side note, when they removed the breathing tube and suctioned out her nose in advance of inserting her feeding tube the doctor's pulled out more mucus and snot and dried blood than I knew possible. It makes me more than a little sketched out to think about just what is sitting in my sinuses.
- Our first scare came when Aurelia had a wet diaper. As silly as that sounds, Aurelia so hates wet diapers that she worked herself into a fierce frenzy that resulted in a back flow of non-oxygenated blood above her pulmonary artery. This, literally, turned Aurelia blue. As the blood Aurelia needed to oxygenate got clogged above her pulmonary artery her oxygen saturation rate fell precipitously and the team installed a nasal line and forced room air into her lungs at 70% capacity. After about fifteen minutes of actually suffocating her body Aurelia calmed down and over the course of the evening the team dialed back her room oxygen intake to 50% (where it remained until earlier today when it dropped to 40%).
- Our second setback came when Aurelia's fluid intake level became too high. While she did pee (thank God for the pee!), she hadn't had any bowel movements and she wasn't peeing nearly enough. This kept us from starting scheduled feeds and prevented us from doing anything than a mouth treatment, or a coating of the lips and gums with breast milk.

Evening rounds passed without event and when we arrived this morning our current situation two days after the surgery included:
- Aurelia still having too much fluid in her, an x-ray showing hazy lungs, and lasix being ordered for her to compensate her decreased kidney output.
- Two bowel movements (yippee!) putting us back on schedule for feedings to start today.
- Bleeding from her incision (yikes!) that was clearly more than post-operation oozing, but not enough bleeding to cause a change in her vital signs. Still, it was worrisome enough to generate two ultrasounds and an x-ray
- a slight increase in the amount of fluid her kidney processed resulting in only a +100 or so intake from her second day.

Thankfully, we had a good day after those few concerns. Genetic screening (a genome array test) came back and showed no anomalies, meaning that as of now Aurelia and all her problems is simply our beautiful and perfect freak of nature and not the victim of a genetic disorder. Our geneticists are ordering one last test that is the best insurance can buy to see if there are any abnormalities at all that could account for all these problems. This test will take some time to come back, but we are thrilled to know that there is no genetic syndrome at play in our new daughter's struggles.

Additionally, Aurelia had only one real temper tantrum today and she recovered well, meaning that we didn't need to increase the amount of oxygen she received. Similarly, the ultrasound of her head and chest (as well as the x-ray) came back negative, proving that her heart was not bleeding and that there was no fluid build up around her heart or in her heart cavity, or around her lungs. The best guess of the team is that her chest muscles acquired increased blood levels during and after surgery and this is the subsequent squeezing of a sponge; her muscles releasing this blood intake and her incision becoming the natural outlet for the blood.

Dr. Ince also heard bowel sounds during her rounds and because of the two bowel movements we started Aurelia on feeds through her nasal tube. She has had two 5 ml feedings and one 10 ml feeding as of my writing. She will get feeds every three hours or so, barring any complications.

Lastly, Aurelia has had two ENORMOUS diapers, and when we say enormous we mean GARGANTUAN! These things weighed a ton, by all accounts. Or maybe a couple of ounces, but still, it means that she's now really passing that fluid.

Other than that, the medical news is stable and good. She's progressing well and it seems as if the bleeding at her incision has slowed. I'll keep you posted as I learn more and perhaps post a more 'human' reaction to the last several days.

With love,
Charley

Her next heartbeat

Jillian and I are the sort of tired happy that comes after a long car trip - happy to be at your destination, unsure of exactly how you got there, and worried about what else could possibly go wrong before the day is over.

Aurelia is amazing. I am astounded at her resiliency and fortitude. This girl was born with so many complications, so many problems, endured invasive bowel surgery during her first day and followed up that performance with open heart surgery at age eleven days. Just yesterday her sternum was cracked, her ribs spread wide, and her body frozen into submission. Today she is resting, with a half-smile on her face and covered in residual orange dye; a silly sort of October pumpkin.

The surgery yesterday took far longer than we had hoped or even considered. Aurelia was out of our hands and actually in surgery from seven-thirty in the morning to three in the afternoon. In surgery the doctors changed their game plan after they saw the situation in her heart. The initial plan included putting Aurelia on bypass and then banding her pulmonary artery before making any incisions into the actual heart (excluding the sack that exists around the muscle). When they got in to her chest, however, they recognized that the aortic arch was far more narrowed than anticipated and required their skilled attention first. Thankfully, Dr. Gruber insisted on going in her chest and his decision made sure that they widened all of the narrowed parts of`Aurelia's arch; had they done the previously mentioned side incision they would have missed part of her narrowed aorta and would have likely needed to do a second surgery.

While I am on the topic of Dr. Gruber, I want to make sure I record just how amazing it was to see him in action yesterday morning. On Sunday all of the cardiac surgeons & fellows, some fifteen in all, met and discussed Aurelia's case. Dr. Gruber chaired that meeting from Cleveland (he was at a speaking engagement) and apparently a number of the team disagreed with his assessment that we enter Aurelia's chest cavity from the front.

When we met with Dr. Pillai that Sunday afternoon the message we received was that of the dissenting team members - that Aurelia's surgery would be from the side, most likely - and we were happy with the decision to go with a less invasive procedure. At crib-side Monday morning Dr. Gruber gave us one final debriefing on the procedure and mentioned going in from the front. Jillian noticed the discrepancy immediately and made mention of the plans we heard the day before to go in through her ribcage.

Dr. Gruber underwent some sort of Fellow Transformation, reserved for only the experts in his field. First he ordered one nurse (or doctor, for that matter - nobody outranked him during those next few moments, no matter their title) to retrieve Aurelia's paperwork. He concisely, but not rudely, discredited the fellow who conferenced with us Sunday by indicating his utter displeasure with our receiving incorrect information. His words to us included, "I'm not sure what that Fellow heard or said, but there clearly was a miscommunication. The plan was never to go in through the side. There was some questioning of what our final decision would be, but I clearly ruled out going in from the side."

After he directed the many staff to clean and re-stamp Aurelia on the front of her chest he called surgery and seemed pleased that everyone in the operating room had been planning to go in through Aurelia's chest. Thankfully the repair to Aurelia's arch, facilitated by that decision to open her chest, went without incident. I have such a hard time trying to imagine my daughter laying on an operating table with her chest open wide and blue from the cold that has shut down all the major systems of her body. I just can't fathom what it looked like to watch her heart slow and slow one beat at a time until it sat silent and still. I cry thinking about her there, her body dead and a machine carrying precious oxygen and blood to her brain and limbs.

The surgical team moved quickly after that, repairing the band and slowly moving Aurelia off bypass. At this point the first of the challenges facing Aurelia (as if all that came before was easy!) manifested itself in the form of excessive bleeding. Throughout any complicated surgery like this many nicks and cuts are made in the body, along veins and organs and muscle and tissue, but very rarely is bleeding seen by the surgical team. A body in Aurelia's state is so cold that you can't see the amount of bleeding until they begin to take her off bypass and warm her up, waking her heart from its slumber.

Aurelia underwent a series of cooling procedures over two and a half hours to slow the excessive bleeding inside her chest cavity. These procedures amounted to literally filling Aurelia with ice, waiting fifteen minutes, warming her up again, checking for bleeding and re-applying ice if needed. Eventually Aurelia's leaks sealed themselves and the doctors made sure that all the vents and lines into her firmly lay in place. At that point Aurelia had a drainage line installed, two pacemaker wires, an IV directly to her chest cavity and heart, another IV in her foot, and an arterial line into her belly button.

We met with Dr. Gruber after the surgery for his recounting of the surgery and he showed enthusiasm and pleasure with Aurelia's progress. Other than her bleeding he felt confident that she would emerge from the procedure with much improved breathing and heart function. Dr. Gruber decided to set the pulmonary artery function at 90% its original and he avoided looking for other potential problems with Aurelia's mitral valve and her existing muscular VSD (the large hole between her left and right ventricle). Jillian and I were happy with the outcome and Dr. Gruber's decision to avoid looking for further problems with Aurelia's valve and hole, because both may improve themselves over time and because the valve may actually not have much of a problem once her heart regains strength.

When we first saw Aurelia we were thrilled. As scary and difficult as it was to look at her I will never forget the joy in my heart at that moment. All that afternoon and evening I felt like running and hugging and kissing everyone I saw, from Dr. Ince to the admitting orderly out by the entrance to the CICU. Jillian felt more than mild embarrassment at my excitement and expression. I don't blame her. It's quite possible that I mortified not only Jillian, but Aurelia, too.

After about one hour the bleeding from Aurelia's chest cavity slowed to barely a trickle and we started to face the second and far worse concern with her surgery, this time revolving around urine. When put on bypass and our temperatures lowered our systems shut down one by one. As we come back to life our body slowly regains heat (Aurelia's temperature still hadn't reached normal two hours after her surgery finished) in controlled increments and the body's systems begin to reboot one by one. We skipped over any trouble with Aurelia's respiratory system by having her on the machine that took care of that process for her, her bleeding in her circulatory system had slowly come under control, her nervous system seemed to be intact, she hadn't suffered any strokes, and brain function appeared normal.

Unfortunately, prior to, during, and after surgery Aurelia hadn't passed any urine through her catheter. In any normal person this wouldn't raise much of a concern, but with only one kidney the chance of system shock and failure meant life or death for our baby girl. Dr. Ince, whose praises I sang before, kept a measured response and reassured Jillian and I that this sort of delay did not mean anything out of the ordinary. Stressed nonetheless we felt increasing tension as the minutes went by and as the staff began discussing their response to a kidney failure. The sheer mention of 'what if' scenarios had me in near panic. All I wanted for her was to pee. I have never, ever, wanted anyone to pee so badly in my life.

She kept us waiting nearly two hours, the cut off point for 'no concern' we later found out, until we saw a few drops in her catheter. I about jumped for joy at the sight of a yellow droplet in her tube. This seems silly, I suppose, but looking at her bruised chest, swollen face and arms, and knowing that all that fluid she had been infused with during surgery had to escape, I think I actually felt more fear than I did when they wheeled her away for the operation earlier that morning.

We stayed late last evening with her and left her happy that she once again faced down tough odds and beat them with courage and tenacity. Though a machine was breathing for her and her chest still bled some, and despite the low urine output, Aurelia inspired strength and hope in us that we needed to fight back the worry and concern we felt all day.

I confess that at points during the day I let my mind drift away to places dark and sad, wondering what it would be like to lose her. We agreed to participate in a genetic study  before Aurelia's surgery, permitting the CHOP staff to keep tissue and blood samples from Aurelia's heart permanently. Dr. Gruber and his team will use the sample (amongst many others) to try and identify the genetic cause behind HLHS. It is suspected that the disease is genetic, but much more work needs to be done before a specific cause is identified. I found a minuscule measure of comfort knowing that even if she died, Aurelia's heart and blood could still help someone else at risk of HLHS. I even felt good knowing that if Aurelia's DNA showed anything even remotely useful that Jillian and I could then give our own DNA and blood to support scholarship and research into the defect.

As for today, other than one minor scare, Aurelia continues to do well. I'll give a more detailed post a little later, but I know folks have been waiting for details so I wanted to write this before my memory  lost pieces of Aurelia's journey.

Thank you everyone, for all your positive thoughts and prayers and love. Your support has resulted in immeasurable strength needed and used by Jillian and me. We love you.