Different than any other day

Jillian posted this on Facebook, but I wanted to be sure we recorded it here as well.


Today feels different than most other days.  
With Wednesday approaching quicker and quicker, I have fears and a feeling of helplessness.  I am looking forward to the surgery being over with for many reasons.  Aurelia’s heart will be whole.  Complete.  Healed.  For that I am thankful to the hundreds of doctors, nurses, surgeons, and others who will have taken part in her care.  Today’s feelings aren’t about the upcoming surgery though; they focus more-so on our daughter, Madison, who has been such a trooper through all of this.  Don’t get me wrong, Aurelia is my little heart warrior and I think that she is the bravest person that I know.  Madison though, has been through every bit of this with us.  And she has weathered it all very well.  I am very proud of the caring, sweet girl that she has become.  She is the best big-sister in the world and I absolutely treasure her. 
 I am looking forward to normalcy in our family.  Of the last 10 months, I have spent 116 nights away from home, at three different Ronald McDonald Houses.  That is nearly 1/3 of a year.  This next stay will likely be a week or two and this one I am dreading the most.  Madison has been with me for nearly every night for the last year, but this time Charley and I are opting to leave her at home with my parents taking care of her.   But leaving her behind is tearing me apart.  I know that it will be better for all of us in the long run.  Charley and I can spend all of our time at the hospital with Aurelia, especially during the first few days post-op.  We won’t have to rush back to the RMH for dinner or worry that we aren’t splitting our time equitably between both girls.  For Madison though, hopefully it will be a time for her to enjoy time at home with her grandparents.  She can play in her pool or in the sprinkler and have all of her toys and books close by. She can sleep in her own bed.  She will have her Uly and Shy (our cats) and she will have time for arts and crafts and the undivided attention of her grandparents. 
 For my part though, I am going to miss her dearly.  Having her with me for those first 11 weeks of Aurelia’s life (and the week before, when we went to Philly early) was such a blessing.  She was a wonderful distraction on tough days.  It was good to go “home” in the evenings and have her to be with, especially when Charley wasn’t there.  I think that I was able to be with her more and to see her grow and change more than I would have if I had been working all of that time.  It really was very special.  But this time, I think that we need to focus on Aurelia and to spend our time and energy on her.  I guess that anyone that has more than one child feels torn when they can’t be with both kids at the same time.  This just feels so painful though. And while there are still 2 surgeries ahead, I don’t have the same sense of angst when thinking about them.  Maybe that is because they are not right in front of me yet.  In the grand scheme of things, they will be minor compared to many of the other surgeries that Aurelia has already faced.  They will also be much shorter stays in the hospital, and hopefully they won’t have the risk of as many complications as are possible with this upcoming surgery. 
 No matter what, right now I am feeling scared about the next two weeks.  I would love for Aurelia’s surgery and recovery to be as smooth as possible, but I know our girl and there is bound to be some sort of a complication.  I take solace in knowing that Madison is just a car ride away.  And perhaps when Aurelia is stable, I’ll go home for a night.  Or maybe bring her back to Philly.  After all, I’m sure that she will be missing her sister (and her Mama and Daddy) just as much as we’ll be missing her. 

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!