Livers, Waits and Caffeine

Well, Selene was a champ once again. She had a 9am appointment for an ultrasound of her liver, and then an 11:30 oncology appointment to review the results.  And we now know that an 11:30 clinic appointment really means a 12:30 appointment. Thank goodness Dan was on duty once again today!

The ultrasound technician said she was the most cooperative 2 year old she ever had. Later Dan told me it took 45 minutes and she just laid there watching a cartoon while they did the test. She's pretty incredible.

And after not being allowed to eat before her ultrasound she had to follow it up with 9 vials of blood, which meant her veins weren't strong after being hungry and dehydrated but she was still and sat there while Mr. Pete wiggled the needle around to find her vein.

Next they had their marathon wait for Miss Ellen and then another marathon wait for Dr. Olson.  But in the end the results were reassuring.  The ultrasound was normal and her liver numbers were lower than last week though still elevated above what they hope to see.  The blood will be tested for virals that they would need to take action against. There's still the chance that she has a virus causing this that they aren't testing for, but there wouldn't be a treatment against them so they aren't testing for them.

Dr. Olson did say that while there are no other indicators that this would be GVHD, there is a .01% chance that it's manifesting.  I guess technically we are in the 100 day window which means our chance of this happening are increased. And we all know how our girl likes to defy odds, both good and bad.

So I'm not sure what we are "hoping" for. That it's viral? That sounds weird but I guess then we'd have an answer. If we don't have answers or vast improvement in the next few weeks then we'll need to do a liver biopsy. Let's hope it doesn't come to that.

On the bright side, they don't need us back for two weeks after this (which is nice since this was two weeks in a row.) And THEN if everything looks good they'll stretch us out longer! That makes me happy both because it means other than her crazy liver that she is doing well and that I don't have to figure out how to take her while dealing with a newborn.

And of course I took Ainsley and Kalina to the mall for Starbucks, the indoor playground, and the Disney store. Which means I had to assuage my guilt with matching Tinker Bell dresses for the girls  :-)

My Starbucks

Thumbs up after an ultrasound, 9 vials of blood and a two hour wait.

Tinker Bell dresses and butterfly nets

Copycat

As Promised

I promised I'd have more, although I don't have any other news.  I spoke with Ellen (her Nurse Practitioner) today and she said they now want an ultrasound of Selene's liver. They don't know what they're looking for so they're just looking everywhere.

I'm trying to stay calm but it's hard not to get scared. You go into transplant knowing there are complications, that it could wreak havoc on your child's tiny perfect body. But you hope you won't see any of those complications.  Thankfully Dan has shut down next week. I'm sure that in true Dan fashion he will be working remotely more hours than he should, but at least he'll be able to take another CHOP shift. It's such a relief that he's been such a help but so strange to relinquish my duties. This has always been my realm and I feel like I'm bailing on my most important job. I'm sure after I take back over for the next appointment I'll be exhausted and overwhelmed trying to haul the baby there. I'm also not looking forward to the fact that my first appointment back will include bloodwork for Kalina.

When they had to do the heel prick in the hospital they asked if we were ok being in the room when it happened. Dan and I gave each other a knowing look and said it was fine. We calmly held her tiny hands and whispered love to her for the one minute ordeal. But a heel prick is completely different than a vein blood draw on a one month old newborn. I'm sure tiger Mom will come out though and I'll handle it just fine.

So continued prayers for both those girls is appreciated!

On a happy note, we celebrated Ainsley's 5th birthday last weekend. Of course we couldn't have a "real" party and my heart broke when she asked when we were sending invitations to her classmates. I explained that we couldn't do a party this year because of Selene. She took it well but I wanted to make this party amazing.  My sister joined us for a long weekend and we slightly broke the rules with 5 people over and Nana, Grandad and her uncles came up for a cookout.

Jolene and I decorated a frozen cake with homeade "ice" (rock candy, which is quite difficult to make without a candy thermometer). Add in some balloons and she was a happy camper who kept running around yelling "Thank you thank you for everything!" I love my happy, content, appreciative little girl. When Selene was asking for presents too,  she even said "Don't worry, Selene. I'll share everything." Heart swells...

I will update more next week when we have some blood results back and hopefully some answers.

Happy Father's day to all the amazing men in our lives!!

The Frozen cake and the ice lake we made with the botched batch.

The 5 year old!

3 Generations! Kalina meets Popop and sees Gigi again!

Aunt Jojo keeping it classy.

Aunt Jojo putting my kids to work.

Birthday sparklers!

Lovely day with family!

Happy Birthday to you!

I'll come back with more!

I have so much more to write but a very needy newborn, a now very exhausted Jen, and blogging from my phone don't bode well for verbose posts.

So the quick update is that Selene looks and feels great (other than another puking incident) and her CBC was really good. Once of the highest ANC's yet! 

But her liver numbers sky rocketed. They want her back next week to test again. They can't figure it out because she shows no other signs that go along with GVHD liver complications nor is she on any medications which can be a cause. We also ruled out some of the main viral issues but they may test others.

I'm trying to avoid googling liver complications until we have a better idea of what's going on.

So until then prayers and good thoughts are appreciated!!

I'll be back with more tomorrow, though I won't say I promise because I barely have time to eat most days.

A peace offering for my failed updates- our first family photo from Ainsley's 5th birthday this weekend!

Another clinic Tuesday for everyone!

I fully intended to write Tuesday night, then Wednesday, then Thursday. Funny how needy newborns are!

Dan took Selene to CHOP on Tuesday as I gathered the other girls for a weight check.  He called to say Selene threw up on the way into the city. I freaked out. I'm sure that the english muffin dipped in ketchup didn't help (I didn't realize I was out of oatmeal and she begs for bread and ketchup....ew). But then I realized that Daddy's driving on Lincoln Drive, in a manual probably is what did her in :-)

We got to the pedi and the nurse weighed Kalina at 8.8. Back to birthweight! However, as I undressed Kalina I noticed her belly button had bled a little and a tiny piece of cord that was still in her button was a little black. I immediately became terrified, since a not healing belly button was the first sign of Neutropenia. When her stump fell off at one week I thought we were golden. I asked the NP about it as she used some silver nitrate on it (exactly what the pedi did for Selene). She said it could still be normal. Then she was really concerned about slight jaundice. She's fairly certain that it is breastfeeding jaundice...but now if I feel it isn't getting better then I need to take her to Abington for a billi test. If we do that, then I will have them draw the labs for K as well, though we were planning to do that at CHOP after she's a month old.

While I'm getting that news, Dan texts me a picture of Selene with an IV. I didn't realize that the alternative to bactrim (which we stopped because it was affecting her liver) would be the monthly Pentamidine. She looked so unhappy! But she's strong and just snuggled up with Dan in the day hospital and watched Pocahontas. Her liver numbers were down a bit which as good and now we get to move to every other week! It's a move in the right direction. Otherwise the doctors are pretty pleased with her and none of these "setbacks" seem to be worrying them. I guess they see it all and worst case scenarios. Thank goodness that's not us!

I feel a little bad but since Dan was out with Selene I took the girls to the mall. Ainsley got to play in the play area and then we had lunch at Chic Fil A.  I can't wait for Beanie to be able to join us for outings again!

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Today was Ainsley's school picnic.  We were excited that her preschool was part of a school because we felt that would be a better experience than a standalone preschool program. We wanted her in the structure of a school but didn't realize moving her to public school would be so sad! Her teachers and school and all of the parents have been INCREDIBLE.  If I'm not 100% happy with public then I'll pull her and send her there! I also just found out that her teacher is moving to the full week of PreK 3. Maybe I'll send Selene every day just so that she can be with Miss M!

So now Summer Vacation begins! How to balance it with keeping Ainsley sane without going places and keeping Selene safe will be fun. But at least now our mornings get to be a little bit lazy.

Happy Summer!!

She reminds me of Napoleon Dynamite, Beanie isn't happy! 

Sisterly love

Everyone loves the baby!

Back to birth weight!

Doing Daddy's hair

First day and last day!

Comfy

Lazy mornings