Sunday, September 25, 2011

Bonding-An Update

I've decided it's time for an update to this post on how Lily and I are doing! We are doing great, actually. She definitely prefers me to anyone else, even Daddy! She gets really excited when I come home from being out. She crawls to me all the time and "asks" me to pick her up and hold her. She is a snuggle bug.

This past Thursday she demonstrated stranger anxiety for the first time when her speech therapist came to work with her! That made it harder to get work done, but actually it is a really positive thing.

Truthfully, I am glad that it took us a few months to get to this point. It means that this attachment is probably the real thing, and not just a "trauma bond". Seems like God does know what He is doing after all! I really need to be reminded of that sometimes.

In other updates, I am feeling better (thank you for praying!) but today Lily woke up with a snotty nose. She seems to be feeling ok, though, so if you could pray that it passes quickly...that would be great! Also, here's a picture I took of her scar so you can see how nicely it's healing:
Aside from the scar you would never really know that she had open heart surgery just one month ago. She is doing so well!

Thursday, September 22, 2011


"Do not store up for yourselves treasures on earth,
where moths and vermin destroy,
and where thieves break in and steal.
But store up for yourselves treasures in heaven,
where moths and vermin do not destroy,
and where thieves do not break in and steal.
For where your treasure is,
there your heart will be also."
Matthew 6:19-21

Tuesday, September 20, 2011

A Prayer Request

This seems so silly I almost didn't post it...

This morning I woke up with a sore throat, and it has persisted throughout the day. Usually this means I have a cold, which often turns into a sinus infection. I am feeling pretty yucky right now. I didn't give Lily a bath, I put her to bed early, and the kitchen hasn't been cleaned in days (and probably won't get cleaned tonight, either).

So, would you please pray for me to feel better? And especially pray that this cold is over and done with quickly and doesn't end up like the last one? I was last sick right after we got home with Lily and it was Awful. I don't do well when I'm sick.

Thanks, friends.

Friday, September 16, 2011

Early Intervention

Lily had her assessment for Early Intervention (EI) this week and it went great!! She will be getting speech therapy (ST) once per week and developmental therapy (DT) once per week. The DT just means everything but speech/feeding: gross & fine motor skills, physical therapy, etc. I am SO excited and I just LOVE all the therapists! Also, since they come to our house, we don't have to go anywhere! Best of all, it is FREE!

Here is where Lily tested:
Gross motor skills: 8-10 months. This is because she can pull to a stand but not stay up for more than a few seconds.
Fine motor skills: 6 months. She needs to work on picking up small objects, like Cheerios, with "pincher" fingers.
Cognitive ability: 12 months. She is a smart cookie and all her therapists are impressed with her :)
Social ability: 3 months. This makes perfect sense and doesn't bother me one bit because she's only been in a family for a little over 2 months. She will catch up fast with this.

As for speech/feeding, they had a lot of positive things to say:
1. She babbles a lot, so they think she will start talking fairly quickly!
2. She doesn't scream or gag when food is put into her mouth, which is a really good sign. Basically she just doesn't know what to do with the food! This is what I suspected so it was nice to have that confirmed.
3. Because of #2 above, they don't believe she has any sensory disorders with feeding! This is great, great news.

Overall I am thrilled. I can't wait to see how she knocks everyone's socks off with her development :)

Tuesday, September 13, 2011

Who Knew?

Who knew it would be so hard to find a pharmacy to fill Lily's prescription for sildenafil?
For those who don't know, sildenafil is the generic name for Viagra. Yes, you read that right. It is commonly prescribed to treat pulmonary hypertension, which is high blood pressure in the lungs. It acts by opening up blood vessels, which reduces the pressure.
Anyway, the hard part isn't finding the sildenafil itself, it is finding a pharmacy to compound it (make it into a liquid form). I am learning so much about pharmacies! See, most pharmacies aren't used to doing this, and, in fact, won't. I *think* I found a pharmacy in Salem that will do it, and bill it to the insurance. I found another pharmacy that has it but won't bill it to the insurance.
Hopefully Lily won't need to be on this for more than a year. We had her follow up appointment with her cardiologist today, and everything is looking great. The blood pressure going to her lungs is still too high, but hopefully as her body adjusts to her "new" heart then her blood vessels will compensate accordingly. Until then, she stays on the sildenafil.
The real reason for her smiles:

Sunday, September 11, 2011

Doin' Alright

Sorry for the lack of posts! I've been trying to get us back into a "normal" routine, plus deal with all the things that have piled up over the past few months. It's gonna take me a few more months to catch up, I think.

But enough about me, you want to know about Lily!

She is doing GREAT since we got home. She is smiling spontaneously! She is starting to giggle, usually when she sees her bottle. She is just so HAPPY, it is precious. I hope to catch some of these smiles on camera now that they are happening more frequently.

Yesterday I dressed her up in her first Hokie gear:
I almost caught that smile!
Isn't this bow precious?
Frank Beamer, please meet your newest cheerleader :)

Wednesday, September 7, 2011

By The Way...

...we are HOME! We actually got home yesterday, as we hoped. I'll update more later, things are busy around our house right now!

Monday, September 5, 2011


We may not get to go home tomorrow.


Apparently Lily had a fever of 101.7 on Sunday morning (and nobody thought to tell us until this morning?!?) so they took blood cultures on Sunday afternoon. They have to give the cultures about 48 hours to see if anything grows. That puts us to at least Tuesday afternoon before they can conclude that her infection is gone. If nothing grows, we will be discharged (yay!), but later in the day.

If something does grow...

It will depend on what it is. If it's the same bacteria as before, she'll need more antibiotics through her IV (they never did switch her to Cipro, by the way). That may mean we have to stay another five days, or it may mean that they put in a PICC line so that we can administer them at home. If it's another bacteria altogether...again, it depends on what it is. If it will respond to oral antibiotics, then we can probably go home on Wednesday with a prescription.

Can I be selfish here for a minute?

I. Want. To. Go. Home.

Please, please pray that nothing grows and we are discharged tomorrow. Please.

Sunday, September 4, 2011


We should be discharged on Tuesday! The only thing keeping Lily here right now is her infection/antibiotics. HOWEVER, they just discovered that her particular bug is not resistant to Cipro, so they are probably going to switch her over to that. Since Cipro can be taken orally, that means they can remove the last IV! We hope that will happen today.

Ok, I just have to say that being at the hospital 24/7 is the most BORING thing ever. E.V.E.R. I have a whole new appreciation for what Lily experienced during the first two years of her life. GET US OUTTA HERE!!!!

Friday, September 2, 2011

Pictures From The Last Few Days

From Tuesday:
Getting her hair washed :)
Breathing tube is out!
From today:
She did great with physical therapy today!
She learned how to push the animals back down:
Big news of the day: Lily came off the oxygen and her O2 sats are doing great! Her antibiotics will be five days, and today was Day Two, so we are HOPING to be discharged on TUESDAY!!! She started eating PediaSure today and loves it. During speech therapy I even got her to eat a little bit of pureed bananas off my finger! Amazing! It was a good day :).

There is more to say but I'm just too tired right now. Thank you to Julia Nalle who came and sat with Lily for a few hours this afternoon. THANK YOU!!! 

Thursday, September 1, 2011

We May Be Here A While...

Today was hard. We got some bad news about Lily's infection in her former central line (removed from her neck a few days ago). The bacteria that grew in the cultures is resistant to most antibiotics. The name of the bacteria is Klebsiella pneumoniae, for those who are interested in that sort of thing :). She is currently on two antibiotics, Meropenem and Amikacin. I requested a consult with the Infectious Disease (ID) specialist who ordered the antibiotics, but he showed up when I wasn't in the room, listened to her chest, and then left. I'm sorry, but that is NOT a consult, lol! I want to talk to this guy and ask questions, so I requested a REAL consult again tomorrow.

I am blessed with some wonderful friends who have been emailing me information about this bacteria, and it doesn't seem very good. It's a pretty nasty one. We are on "contact isolation" because it is spread by direct contact (as opposed to airborne). Every time I leave the room I have to wash my hands reeeeeally well, and any visitors/nurses/doctors who come into the room have to wear paper gowns and gloves (no masks b/c it's not airborne, thank goodness). I expect we'll be in contact isolation for the rest of our stay here at UVA. The risk of this being spread to healthy adults and children is minimal. The extra precaution is to protect other patients in the hospital with weak immune systems. So in other words, you can still come for a visit and please do :).

I don't know how long Lily will need to be on these antibiotics...again, a question for the ID consult. My guess is we will be here another two weeks. Hopefully not all of that time will be in the PICU, but I really don't know what their protocol for contact isolation is here. My mommy sixth sense has me really worried about this infection, so please pray for no further complications. 

It was found by taking a blood culture from the central line in her neck this past Sunday night. They removed the line on Monday, which hopefully removed most of the infection. Today she didn't have any fevers, which is a good sign. However...

This brings me to the second hard part of today: Lily has just not been herself. She is lethargic. She just lays in the crib, occasionally picking up her feet/hands to look at them, but not wiggling or moving like she was yesterday. She also refuses eat. THAT alone has me really concerned, because this girl is an EATER. She almost never refuses the bottle. Usually when she sees it she smiles and does a happy dance. Today, nothing. We put it to her lips and she just turns her head away. Also, her "output" has been waaay down today, if you get my drift. That is not like her at all, either. We are keeping Huggies in business, lol! Any one of those things alone wouldn't worry me that much, but all three together, especially her not eating, has really got me worried. However, she doesn't seem to be in pain, so that is good. Another thing she has not done is sleep. At. All. She's still awake as I type this.

Mary (Rob's mom) and I are taking turns on the "night shift" and tonight is my first full night in the hospital with Lily. I've got a cot right next to her crib that is actually pretty nice. The only trouble is the beeping. Oh, the beeping. I've mastered the art of waking up after the first beep and quieting the alarm before the second beep, but that's not helping either of us sleep. I did sleep for about two hours already tonight, then the beepage woke me up so I thought I'd take this chance to blog. 

And I'm eating chocolate. Lots of chocolate. I get the munchies late at night if I'm awake. 

There were some good things today, too: Lily was visited by two Physical Therapists and the Preschool Teacher. They are going to come to her bedside every day. We are also going to get some speech therapy (hopefully daily as well) and a nutrition consult while we are here. I'm super excited about this because it will give us a jump-start on Early Intervention. Might as well get as much done as possible while we are here!!

Ok. The beeping has slowed and you are now all up-to-date. Please keep on praying, and thank you for all your kind comments.