What's this for?

Hearts and such

I'm late in getting this post up, but here it is. Better late than never.

So first of all, February 14th was not just Valentine's day, but it was Congenital Heart Defect Awareness Day (well technically week - Feb 7th - Feb 14th). There is a book called "47 Hearts" written by a pediatric cardiac surgeon. I have yet to read it, but it is VERY inexpensive. You can order it for your kindle or if you don't have one you can download a free kindle reader to just read it on your computer. Anyway, the importance of this book, not only does it have great reviews, but 100% of proceeds go to fund a child in need's heart surgery. We are blessed that we were able to give Lilly her surgery. It's hard to even try to imagine the thought of not being able to give her this gift and what that would mean. So belated Happy CHD Awareness day.

Secondly, we had a great heart pizza party for Lilly this past Sunday!! Eric made Lilly a great heart shaped chocolate cake - too bad Lilly couldn't enjoy it. Next year! We had family and friends over and it was a lot of fun.

Here is a picture of Lilly and her heart cake! Don't you love the party dress :)





On a side note - Lilly is recovering well from surgery. Her incision is healed and looks great. She still has some physical restrictions, but those should only last a couple more weeks! Her sleep, however, is still TERRIBLE!! Ahhhhh. Otherwise she seems pretty happy and content. Eating great as well. She went to the doctor a couple days ago and weighed 13 pounds!!! She has gained nearly 2 pounds in 3 weeks - amazing! She hadn't gained that much in 3 months! She's slowly moving out of her 3 month clothes too. We go to the cardiologist on Tuesday, so I can't wait to see how much more she gained in the past week!

Nothing like a good nap

Here are a few pictures from the past week

Still a little groggy from anesthesia but look at those eyelashes! (and the marks on her cheeks from the tape)



Even after heart surgery I can make her laugh. I think she was laughing for my benefit though. We hung up the picture Aunt Rachel took a few days before we left for surgery.



We got all packed up when we got word we were heading to our very own room and out of the PCICU. There is a baby in there somewhere.



It was an exhausting trip up four flights of stairs to our own room. We made Lilly walk the whole way.



We got this pretty hair bow in our Annabelle Basket. Since Lilly doesn't have a whole lot of hair yet we improvised.



Mama promising her that when she gets home she'll get toys, ponies, games, cookies, candy, etc.....



And this is the "I just busted out of the hospital" outfit.

Long Week

So it's been forever since we posted, but it's been too busy here at the Jones Farm to get on the computer. Eric went back to school Monday and spent the entire week playing catch up, taking tests he missed, and finishing homework that didn't get turned in. UGh.

I've been home with Lilly. Her first two nights home she slept most the night, until about 4 am. Well since then, she is up 3, 4, even 5 times a night! She just wakes up crying. You can't put her down during the day awake or asleep. She just cries. She is not completely miserable - she is smiley and giggly in between it all. It is just night and day- nothing in the middle. Literally she will laugh one second then cry. So all day I just hold her. The only way she can sleep is if I hold her. I wonder how long it will take her to feel better????? Hopefully soon...

On a good note she went to the pediatrician Tuesday. Her doctor was happy with how she looked and was very happy with her breathing. Then Thursday we went to the cardiologist. He was pleased with her as well. They repeated her echo again. There is still moderate leaking on her left valve. But we kinda knew that coming home. Because of that she is at a higher risk for needing another surgery on that valve, but we'll deal with that later. Otherwise, looked very good. OH and she now weighs 11 pounds 9 ounces! Woo hoo, we're moving up finally!

Another good note, she is down from FOUR meds to just TWO now. She will be on her blood pressure medicine probably forever, boo- at least its flavored. Her doctor is talking about also keeping her on the other one long term as well, but it's not definite yet! I'm crossing my fingers he decides to take her off it - she hates that one in particular!

Maybe Eric will be kind enough to post some pictures :) I know that's what people really come here for!!!

To cool for school

Now really, have you ever seen someone look like this just 5 days after open heart surgery? Lilly is too cool!

W.A.W. (What A Week!)

I feel like this should be some monumental, earth-shaking, epic post. But, I'm kinda tired so I'll keep it brief while attempting to touch on some important topics. First of all, we're home! Everything is right with the world again. I can't thank every one enough for all the prayers and well wishes. I think God's voicemail stayed full this week. I kept everyone as up to date as I could this week on facebook with pictures and messages. I received an email every time someone commented on one of these updates and I received an astonishing 365 emails since leaving for Charleston. It was especially helpful during the surgery knowing that there were so many people holding their breath along with us.

I want to give a shout out to the staff of the MUSC children's hospital. Every nurse and doctor we came into contact with this week was friendly, knowledgable, and professional. They all had to explain everything twice to us, once to Mari, then on a fourth grade level so I could understand so they were very patient as well. I want to give a special shout out to Lilly's surgeon Dr. Kavarana. If anyone knows me they know I don't get too excited over professional athletes or famous actors/singers(I understand there was a football game on tonight). But, I definitely got the Bieber fever for Dr. Kavarana this week. This guy is my hero and he is so cool. I saw him a few times after Lilly's surgery just passing him in the hallway or the cafeteria and I was starstruck each time. This is the guy that little kids should aspire to be; they should have Dr. K posters hanging on their walls not Shaq! And to talk to him he makes it sound like what he does is no big deal.

After Lilly's successful heart surgery we were brought into the PCICU where we were to spend a few days while Lilly healed. When we arrived we were given an Annabelle Basket. This basket meant so much to us. In it were receiving blankets, warm socks, a hat, a stuffed elephant toy and a beautiful embroidered burp cloth that really was a shame to get dirty. These baskets are donated by a family who's daughter, Annabelle, had multiple heart surgeries at MUSC. We found out later after talking to a few nurses that Annabelle passed away at just two months of age. After hearing that my heart broke for that family. And for them to turn their experience into a positive one for so many other familes is so inspirational. It makes us truly remember how lucky we are. Annabelle Baskets are funded entirely by donations so if anyone is inspired to donate like we are then please visit their blog to find out how. Annabelle Baskets There was another story we heard about a baby who was born at MUSC and stayed at the PCICU for an entire year!! Can you imagine? Our lives are so perfect, it's good to have reminders of just how lucky we are.

I wish I had some pictures to include with this but I can't find the camera. I'm sure it will show up so check back soon.

Major Progress

Today ended up being awesome. Lilly got both atrial lines out, hurrah! She then got both her central lines out of her legs! She is only on oral meds now, all her IV meds and fluids have stopped. She is drinking milk whenever she wants to. Although, she may go back on a little bit of fluids because she is not drinking much.




They had to sedate her early in the day to get the atrial lines out. Then again later to get the central lines out. She was kinda zonked out tonight from all that. By morning all that will wear off and I imagine she'll be back to her normal self!!

Best of all tonight is that we got to HOLD her!!!!!!!




Eric even managed to hold her for a little, defective clavicle and all.




We even got to give her a good sponge bath tonight. Lots of fun.




The plan for tomorrow is to remove her chest tube!! Also, we will be moving out of the PCICU and into a regular private room come afternoon!!! That means she can have as many visitors as she pleases and for however long as she likes!

We are so excited on how she is progressing. We look forward to tomorrow.

Lilly is doing well today!

Her atrial pressures are coming down today! Her fever has been gone since yesterday as well. She is drinking her milk like a champ. They worry about the babies spitting up when they start to eat after surgery, but Lilly hasn't let a drop go to waste! She got up to 4 ounces in a feeding now and she can drink that in less than 10 minutes which is huge! She was taking up to an hour to take 4 ounces previously, so pretty cool.

Our goals for today are:

Discontinue a couple of meds

Pull both left and right atrial lines

Possibly pull both central lines out of her thighs

Very possibly move out of the PCICU tonight (big possibly)

Also the occupational therapist here at the hospital came to visit her. She is going to work with her a little this afternoon. Let her sit up and see how her upper body and head/neck control is. She will also check on her feeding and help her if she needs any. I think Lilly will really like to sit up a little this afternoon. The last couple of weeks she's always wanted to sit upright so that she can check everything out.

So very good day so far!

Milk and a giraffe

Lilly had a good day today. Around 2:30pm she finally got a chance to take a bottle!!! It was only Pedialyte, but she didn't care! She was so hungry. Then a couple hours later they let her have some formula. After chugging that down she took a nice milk drunk nap :)




Also, the nurse let us take her handcuffs off of her whenever we were watching her. (She has to be handcuffed to the bed so she doesn't pull on all her monitoring stuff and IVs!). She enjoyed having them off and even was happy to see and chew her little giraffe.




Nothing like a manicure to make you feel better!




Right now, her atrial pressures are still too high and the left valve is leakier than just post surgery. The surgeon believes that once we get the extra fluid out of her lungs that those pressures should go down and the valve will leak less. So we have our fingers crossed! He is very happy with how she is acting and recovering otherwise; someone must have forgot to tell him how freaking awesome she is!

Another Update

So Lilly did well last night. They were able to pull her breathing tube this morning, so that was pretty cool. She has had a pretty good fever since last night, though. It is not uncommon for them to get fevers from all the stress of the operation, but they usually don't last that long. Her bloodwork is still good and the fever is controllable, so we will see.

Also, the pressures in her atria that are related to the valve repair have gone up since last night. Ideally, the surgeon wanted them to stay the same or even out. She has been put on some extra meds to try to control this. We will see what happens over the next 24 hours with that. Once her pressures have come down a little we will be much more out of the woods, so we are anxious about that.

Otherwise, her pain is being controlled. She cries a little, but not too much - more so I think because she really wants a bottle to drink (which she'll be able to do hopefully in a couple of hours) and to be held. Overall, so far so good, I suppose.

We will keep you updated. If you want more up to date stuff, I'm sure Eric is posting on his Facebook.

Surgery Complete

Mission Accomplished.

Lilly came out of surgery around 2pm today. She was in actual surgery for about six hours. The surgery went fairly well. The three holes were patched. Her valve leakiness was much more severe than the echo had shown and they had anticipated. But her surgeon feels fairly confident about the valve repair. They will monitor the valve over the next few days to decide if another surgery is imminent for that. That will be a rare case scenario, thank God. There is still the potential that she would need surgery on that valve later down the road (but that could be as much as 15 or 30 years down the road). Besides the valve issues, the rest of the surgery was pretty standard. Our surgeon says he is cautiously optomistic and happy with the surgery.

We visited her about 45 minutes ago for a few minutes. She is still VERY sleepy. Besides having a lot of IVs, wires, tubes, etc on her, she looks pretty darn good. The ICU doctor is very happy with how she is doing. We hope to get her off the ventilator tomorrow - that will be our first step!!

Pre-op Success!

We had our pre-op workup day today and it was super exhausting just like we were promised. It was eight hours to be exact. Lilly had her last bit of milk at 3 am, then was allowed only apple juice or water till 8am. I was very worried this would make her cranky and fussy. But no. Lilly was such an AWESOME little baby!!!



She didn't whine or fuss about being starved. She was such a champ and was always very interested in every new person we met! The only time she EVER cried was when they gave her the sedating medicine. It was an oral med that the nurses told us tasted horrible and all babies acted like you were torturing them when you gave it to them. Well, Lilly cried about it, but still drank it like a pro! She is SO awesome. She didn't even cry for the gazillion of blood tubes that they pulled (it was after the sedation but it was after she woke up and was drinking her bottle).



After the echocardiogram Lilly was allowed to drink some apple juice and milk. They had her hooked up to some nasal oxygen because the sedation made her oxygen levels low. And boy could she CHUG a bottle with that hooked up!! It was a little glimpse of how she will be once she's recovered so that was good to see.



And, of course, Mommy's kisses always make her feel better.



Otherwise it was a long boring day. We talked to what seemed like a million people and heard the same thing over and over from each one of them. The repetition was good to help prepare us on how she would look and act after her surgery. So we will see how it all goes! Here's a little video of Lilly very ready to leave.



Right now Lilly is very tired from her long day and the sedation. Tomorrow we will get to the hospital at 5:30 am and then she should be in surgery around 7am. The prep, surgery and recovery take about 5 - 6 hours so we plan to see her early afternoon. I'll do updates occasionally on Facebook for people who are on there.