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!