She made it!

It has been a tremendously long day with many delays, but she made it! There is much more to write and say, but for now we are out of the darkest woods and into the thickets. She has weathered the storm and Jillian and I know with certainty that neither she, nor we, could have made it without your love and support. Thank you!.

Mid-surgery update

Just a quick mid-surgery update:

Pulmonary band is in place. Aortic bridge is sliced and enlarged with the transplanted material. All the lines are in place on her.

Her chest is still open and they are waiting for the bleeding to slow. Her bleeding rate right now is 'normal' as far as that goes, but it still worries the sh*t out of me. Yes, I said sh*t. When you do this type of surgery with this many sutures, then there is a good bit of 'leaking'. Once the bleeding slows they will close her up.

More news as we get it from our nurse.

I'm not even sure...

I'm not even sure what to write about today. Aurelia has gone in for her surgery and is very likely just now undergoing her first incisions. We stayed the night here at the hospital, cramming ourselves into a single bed so that we could be here for our girl. Jillian pumped crib-side and I managed to get all the materials finished for today's, tomorrow's and Wednesday's lessons so when the early morning rose we could spend as much time with her as possible.

Our morning was quiet and tense, nervous and upsetting, and full of loving moments. We whispered affections to Aurelia and held her tight in our hands. I felt her hand on my face, kissed her little lips and nose, and caressed her cheeks and forehead. I cried at her smile and smiled at her little pout. Jillian and I split our time this morning holding her and covering her with kisses.

Her surgery has changed somewhat since we last conferred with cardiology. Today they will go in through her chest (we thought as of yesterday that the incision would be in her side), they will insert a variety of tubes and lines and wires into her before they begin the surgery. She will have several wires laid upon her chest to monitor any potential disrhythmia. She will also have a line placed into her wrist to function as her IV, and a drain inserted into her chest cavity. There is a possibility that they will insert a line directly into her heart to function as an IV if it is needed. She also had an arterial line put into her belly button and of course a catheter.

The plan is to place a band around her pulmonary artery to restrict the amount of blood flowing into her lungs (which leads to fluid build up and problems or troubles breathing and eating) and then make an incision along her tiny aortic bridge, spread it apart and graph it together with donated tissue (called a homeograph). If that tissue doesn't take then they will use a synthetic material. Of course before any of this can be done she has to be put on full bypass and transfused with a variety of blood products to thin her blood, then help it clot later in the surgery.

Essentially they stop all blood flow to the heart, drop her temperature to about 17 degrees celsius, or 62 degrees Fahrenheit, so that her heart slows to what is in essence a stop. Once her heart is ready for the first incision they will work on the aorta. They will also be collecting small parts of her heart that are typically discarded during surgery and using them in a study which we will talk about at a later time.

I forgot to mention that they will have to open up the sack that normally surrounds the heart and they will actually leave that open and insert what amount to several man made valves into her heart that they will then keep there to use in future surgeries or her recovery, should they need them. Ideally, Aurelia's sternum will still be more cartilage than bone so that they will be able to pack it with what amounts to a paste to help the bone meld together again. If her sternum is all bone they will then have to wire the bone with a non-magnetic wire that they will then remove for her second surgery. 

Our nurse just came in for our second update since she's been gone, and Aurelia has been undergoing the actual repair for about twenty minutes. Things are going according to plan.  That's about all we have for now, aside from red-eyes and headaches. We'll keep you all updated as we can.

Busy busy busy

It has been a bit busy over at what I'm now calling the Fall Cottage, or Children's Hospital of Philadelphia. Aurelia was moved from one pod to another (not a very stressful or difficult thing, but the staff needed to shuffle around some room for beds. Overall, she's doing well and stable for the most part, but there have been numerous small changes and alterations to her treatment as they prepare her as best they can for Monday's surgery.

In general treatment over the last few days has revolved around Aurelia's digestion and breathing. Initially our plan was to have feedings begin on Friday, but general surgery wants to wait until some time after Monday since Aurelia's stomach still isn't processing enough fluid. This isn't really a problem, and it's certainly not something that has anyone too concerned, just a readjustment of an already fluid timetable.

The only real ailment that our team is watching very closely during these last few days is Aurelia's breathing, or respiratory rate. She had been on a diuretic two times a day earlier in the week, but seemed not to need so much help ridding herself of fluid so the team dropped the dosage to one. They also stopped her daily chest x-ray and adjusted her electrolytes as she began to have some changes in her nutrition intake.

This morning, however, Aurelia's respiratory rate climbed and hovered in the 100's. Normally somewhere in the sixties or seventies, this constantly elevated rate caused her too much duress so they administered some additional lasix and moved her diuretic up to the original twice a day dosage. The doctors anticipated ordering an afternoon chest x-ray but our girl bounced back, filled up her diapers, and has a negative fluid level for the day so that precaution has been called off.

This makes me very glad because her quick response to the medication and her rather exuberant urination means her kidney is working great. Add to that the still decreasing amount of fluid coming from her stomach and she's still doing well. Her weight loss is well within normal limits as well, and the only thing we'll see in the future that is new to us today is the arrival of a central line after surgery. We expected this, but in the commotion and details of Aurelia's case we both forgot that she'd have this procedure done to supplement her  feedings after Monday's surgery.

The nursing staff is still great and Jillian and I were excited to see our favorite, Pam, come over to our pod and visit with us for a good ten minutes. We just chit-chatted and got caught up, but it really made us feel welcome and a part of the care team here in the CICU. Every nurse has her own personality of course, but Pam really makes this place feel like home for us, and in a scary place where children in warmers or cribs come and go, nurses and doctors scurry from one patient to the next, and monitors beep ominously over the heads of innocent babies, that says something.

There was even a moment where six or seven nurses gathered in our pod (only one baby beside Aurelia is here) and just talked with one another, laughing and chuckling, sharing stories and smiles, and it made Jillian and I feel so relaxed and relieved, and really comfortable among everyone working. We didn't feel at all in the way or unwelcome or awkward, and that is great.

I'll post an additional reflection later today, but it had been some time since we updated and I wanted to share this news. A few other things to share include my 4th period students chipping in together and convincing the mother of one of the students to create and gift us with this amazing flower arrangement brimming with care and love and concern. I cried in class (and over lunch when they couldn't see me) and Jillian cried as well when she got the voice-mail. Madison was hysterical when she saw me today, running toward me in the parking garage and then being so excited she ran in circles around me with a huge smile. I think most special of all (other than those moments when Madison was snuggled on my shoulder napping) was holding Aurelia for a good hour straight. She kept her body temperature up, she cooed, smiled, pursed her lips, made little faces, pooped (yay!), and twitched away in her dreamland. It was heavenly, even though I was exhausted and could barely keep my eyes open!

For now Jillian and I are going to head back to the Ronald McDonald House and get some dinner and then call it a night. As much as I'd love to be here for hours this evening, I need to rest up and prepare for what will be a very stressful few days and evenings. Love to you all!

From Jillian - One Week Old

Jillian's computer was giving her some grief yesterday, so she couldn't get this post up - I'm going to try for her from my end:

Today our little Aurelia is one week old.  It is hard to believe that a full week has gone by.  She has already had one surgery and is getting prepared for her next one - "The Big One" - as I keep calling it.  I spent quite a bit of time with her today, which was really good for me.  I like to think that she enjoyed the extra time with Mama today too - I got to hold her for a full hour and while she was a bit fussy at first, she settled down rather quickly and slept blissfully for most of the time.  She likes to put her hands near her face, so as long as she was able to touch her face, she was quite content.

I am happy that we got moved into the Philadelphia Ronald McDonald House.  We are a LOT closer (only 1 mile from the hospital, by car), which makes visits a lot easier.  Today was the first day of our new routine, but I think that it will work well when we get it established.  It is very important to Charley and I that Madison gets to see her baby sister frequently, so my mom and Madison come along in the morning for a visit.  Maddie is very interested in the "bebe" - in fact she woke up this morning pointing at Aurelia's picture (all the way on the other side of the room) and saying "bebe bebe bebe."  It was very dear.  However, when we are cribside, Maddie has started to realize that the baby is taking up some of Mama's attention and she isn't too happy about it. 

Fortunately, I spoke with one of the Child Life Counselors today, who told me that a child of Maddie's age doesn't know the difference between a special needs baby or any other baby.  Her behaviors are perfectly normal for any 18-month old who gets a new sibling.  When we are cribside, she wants me (and only me) to hold her.  She likes to look and point at the baby (and even played "This Little Piggy" with her toes!), but she doesn't like it if I look at the baby or touch the baby or talk to the baby for too long.  She has taken to holding my face, so that I'm looking at her and not at Aurelia.  Sometimes this is really hard for me.  I constantly talk to Madison while she is doing that and tell her that I love her and I love the baby too.  And say encouraging things to her, but it is hard.  I can only imagine what she's feeling.  And again, this is normal sibling stuff.  The fact that her baby sister is hooked up to a bunch of tubes and machines doesn't even faze her, luckily.  She doesn't  know the difference, so that gives me some comfort. 

So, after we visited for a while in the morning, we had lunch and then I brought mom and Maddie back to the Ronald McDonald House.  Then I turned around and headed back for some alone time with the baby.  As happy as I was to have that quiet alone time with Aurelia, I was sad to leave Madison.  I know that my hormones are all out of whack right now, but being away from either of my girls is tough.  However, since I can spend good quality time with each of them best separately, I know that I'm doing the right thing. 

The afternoon visit went well.  I got there just as the cardiac doctors were doing an echo on Aurelia's heart.  This was likely the last echo that she'll have before her surgery on Monday.  The results of this echo will determine how they are going to proceed with her surgery and which course they will take.  Hopefully, I will get a chance to meet with Dr. Gruber tomorrow.  At the very least, I should hear from one of the CICU folks and find out what the plan will be.

During that afternoon visit, I also got to pump cribside, which was really nice.  Being close to your baby while doing that is a really special thing and I hope to do it regularly during her CICU stay. 

A couple of dietician's stopped by during their rounds, so I got to briefly talk to them.  There wasn't much for them to report, since she is getting all of her nutrients through her IV.  They were happy to see that I was pumping though.  I asked about whether or not we would be able to start feeds tomorrow, as Dr. Naim had mentioned earlier in the week.  While the dietician wasn't sure about this, I later had the opportunity to ask Dr. Ince this same question.  At this point, it seems as though Aurelia is still having too much fluid coming out of her stomach, so it is likely that she will not start on feeds until sometime after her surgery. 

I did get the chance to hold her for quite a while, which was so wonderful.  During the previous times that I've held her, she's been bundled in her bedding.  This time, I held onto a couple of blankets and she she was placed in my arms that way.  I wrapped her up tightly so that she'd be warm, but it was the closest holding experience that I've had with her.  She felt so tiny to me without the bedding!  I know that Madison was that small when she was born too, but for some reason Aurelia just seems all the smaller.  I guess it is because she is a bit more fragile than Maddie was, although I'm sure I felt exactly the same way with Madison!

I took a little break and got myself a snack and something to drink.  When I got back up the CICU, Aurelia was fussing a lot more than I've ever seen her fuss.  Her nurse, Janine, got Dr. Ince to see what was on.  Dr. Ince decided to call for an x-ray on her belly, since she hadn't had one in several days.  Dr. Ince thought that perhaps the tube in her belly had adjusted slightly and was causing her discomfort.  They got the x-ray and since she had settled back down and was back to sleep, I headed back to the Ronald McDonald House to have some dinner and snuggle time with Madison. 

I planned to head back to the hospital after Maddie went to bed, so that I could Skype with Charley and he could spend some time with Aurelia.  As it turned out, he had Parent/Teacher night at school, so we weren't able to do it.  The weather is terrible tonight, so I decided to stay back at the house and check in with Aurelia's nurses via phone.

I spoke with her night nurse Robert a few minutes ago and the x-ray results showed that the tube was exactly where it was supposed to be.  Her moments of fussiness were perhaps her personality starting to come out a bit more.  She's been pretty fiesty since the beginning, so maybe she wanted to remind us of that!  Keep us on our toes!

In any case, I had a nice evening with Madison.  We played and read lots of books and then she fell sound asleep on my bed.  I will say that this new "house" that we are in is quite different than the last Ronald McDonald House.  Our room is more like a hotel room, a really old and small hotel room.  Fortunately, we won't be spending a ton of time in here.  There are lot of play areas (and some really cool ones at that!), so there will be plenty for Madison to do while she's here.  In fact, my mom said that there was a college student who is a volunteer here who spent a lot of time playing with Madison in one of the play areas this afternoon.  Perhaps she reminded Maddie of her nanny, Miss Raquel!  She tends to get overwhelmed and really shy if there are a lot of kids or older kids around, so it was nice that she was able to enjoy some quiet moments with someone who could show her the ropes, but not intimidate her. 

And now it is time for bed for me.  I miss Charley terribly and am really happy that tomorrow is Friday.  It is hard to go through this without him being right here.  We text and call each other frequently, but it just isn't the same.  On the phone tonight, he asked me a bunch of questions about Aurelia's care.  I wasn't sure of some of the answers and I know that if he had been here, those questions would have been asked and answered while we were at the hospital.  That's what is tough about being apart - we compliment each other and each think of things that the other hasn't thought of.  We take care of each other and our girls the best that we can considering the circumstances.  It is just easier (and a lot better for peace of mind!) when we are together to do those things!  Good night and thanks for reading.

A daily update and life from afar

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

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

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

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

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

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

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

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

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

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

Some New Pictures

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

Look at those cheeks!!

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