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.