The story of Lilly's heart.

Friday, April 8, 2011

Many apologies to you...

I want to apologize to all of you for not updating until now. I had every intention of updating while Lilly was in surgery, in the hospital, and as she recovers. The waiting room we were in had very poor reception, and it was hard for me to get logged on. I also tried to keep myself distracted by walking around every so often and talking to the few other parents that came in. I thought I would be able to update and work on school work once Lilly was in the ICU and then in her own room, but boy was I wrong! I didn't have a chance to even open my laptop, let alone update anything. So here is a quick recap -

Lilly was out of surgery and in the ICU by about 1:30. She had an extremely difficult time coming out of the anesthesia, and it took 2 of us to hold her down. She was crying, screaming, and kicking (even after 5 rounds of pain meds) from about 3:30- about 11:00pm.  It was hard to see her go through what she did, but I now know how strong she is. It helped that my mom was there to spend the night and let Chelsea and me sleep for a few hours.

The next couple days in the ICU went pretty good. She vomited the day she left ICU to go to her own room, and continued to vomit for a few hours. She was also running a low grade fever. Luckily they did not have to start IV fluids, but they did contemplate it.

Lilly continued to do well and left the hospital Saturday afternoon. She came home and immediately started making her way around the living room playing with every one of her toys. You would have never known she just had open heart surgery.

The week after surgery, she ran fever and had major nightmares just about anytime she would sleep. She would wake up screaming and crying and would not let Chelsea or I put her down. She slept in our bed every night and every nap for a week. The screaming fits would last for at least an hour, sometimes 2. It was scary and hard on all of us. I took her to the doctor to make sure it was nothing else causing the screaming, but the nurses and doctors all agreed that it was just pain and nightmares. So, we now keep her on a constant pain medicine and it seems to have helped. She has been able to sleep in her own crib for a few nights now, and when she wakes up, it's usually only for about 15-30 minutes. Sometimes she lets us put her back in her crib, and sometimes she wants to stay with us.

She amazes me with how well she is recovering. I can't believe that just 2 weeks ago, she was in that ICU bed. We saw her cardiologist today and got a good report! We have to continue her heart medication for 1 more week, and then we'll have a re-check in 2 months. I believe it will then be 6 months and then eventually be just a yearly check-up.

Watching her go through surgery and recovery was/is the hardest thing I have ever done. I have gotten angry, sad, frustrated, and I cried quite a few tears, but I know that God had and still has her in his hands. She is the most beautiful thing I have ever laid my eyes on - even with her battle scar. I hate that she doesn't understand what is going on, but I hope that one day she will know that she is one amazing girl and can make it through anything with God on her side.

I know most of you probably wanted more information and emotion of what actually went on in the hospital, but I'm tired; both physically and emotionally. I'm tired of explaining everything to everyone. And please don't take offense to that statement. It is not meant to be rude or mean, it is just truly how I feel right now. I am glad that it's past us. Not that I won't answer any questions you may have, I just am glad I can finally take a break from it for a little while and just enjoy our amazingly tough little girl.

We love you, Lilly. : )

Tuesday, March 22, 2011

Surgery Day

The morning started out with a bath and some good snuggle time. We made our way up to the hospital about 6:30. We loved on her while we waited to hear her name called. At about 7:15 they called her name to get prepped to go back to the OR. After some prayers, lovins, and nose spray to "make her happy", we handed her off to the anesthesiologist. I cried, but I'm ok now.

About 8:00 Dr. Fewins, the ENT, came in and said the ear tube surgery went well. It will take about 2 hours for them to get all of her IVs in and ready for the heart procedure, and they will call before the incision is made.

My dad ran into Dr. Tam in the hallway, and said he was in a good mood. Yay! : )

I will continue to update this post throughout the day. Facebook is being fickle for me right now, so I may not be able to update there.

9:41am update - Everything is going well and Dr. Tam has started his part. They will call us back in an hour to update.

To be continued...

5k and Mrs. Lisa Hanna

The 5k was AWESOME! Such an unexpected huge success. Bethany, Emily, Lindsay, Amanda, and many others worked so hard to pull everything together. The DJ kept the crowd going and never missed a beat. I highly suggest him for any event you may have coming up. Jitterbug Jump House Rentals also did an awesome job!! And just to let everyone know - everything we had at the race was donated!! I cannot believe how many generous people there are out there! Thank you to everyone that came, and to every company that donated!

Lisa Hanna. She has such a huge heart! She put together a "kimono sewing" for Lilly. Lilly ended up with, I think, 20 kimonos! She will be the most stylish little baby in the cardiac ward! I cannot wait for her to wear each and every one of them. She got some from all over the united states, and even from Austria! I just can't even begin to say how grateful I am for each and every person that made some for my sweet baby girl. And the best part? I get to pay it forward and help out another little heart baby when Lilly is finished with them! : )

So blessed to have such wonderful people our my life!

We love you, Lilly!

Thursday, March 17, 2011

BWW and the surgeon

The Buffalo Wild Wings fundraiser was on Monday. It was great! The staff was truly amazing, and helped in every way they possibly could! They are even thinking about putting a softball team together for the tournament in April. The manager is even thinking about doing another one in April! I had never eaten there before, but I will definitely be going back!

We met with the surgeon, Dr. Tam, today. OH. MY. GOSH. He is awesome! He answered every single question we had and did not make us feel rushed at all...even though we found out he was late for his next appointment! He was very kind in his words and described exactly what he will be doing to Lilly. We found out she will be on the bypass machine for 1 hour - 90 min! That is so scary to me, but I know she's in God's hands. He is also going to work with the ENT, Dr. Fewins, to get her tubes in her ears prior to the heart procedure. I am so thankful for that. Now we won't have to put her to sleep a second time.

We also toured the 2nd and 3rd floors - where we will be spending our week. The surgery waiting room is somewhat small, but there is overflow room in the atrium. Once Lilly gets to her ICU bed, the waiting room is much better. We'll be able to stay with her 24/7 and she can have 2 visitors at a time on top of Chelsea and I. I don't mind having visitors, I just want to stress to everyone that it is pretty scary to see a baby with so many tubes in their tiny little body. Especially a baby you know. Once she is in her regular room, she can play and have as many visitors in her room that show up. There is also a playroom for her to play in once she feels up to it.

I feel a little better about everything now that we have met with Dr. Tam. I am still very nervous about it, but I now have answers to the questions I had. I don't want Lilly to have to go through this, but I am glad we chose Cook's. She will be in the best hands!

The walk is Saturday!! Register Here! We have tons of door prizes and an obstacle bounce house for the kiddos. We'll also have a DJ and food from Panera Bread. It is going to be sooo much fun. The ladies that are organizing it have been working SUPER hard! I am really, really looking forward to being there and seeing all the support and love for Lilly. Like I have said before, we couldn't get through it without all of you.

Well, it's late and I'm tired. Tomorrow I hope to get some house cleaning done, and some stuff done for Lilly's new nursery! I will go into details later, but my friend Laura has given the gift of a nursery for Lilly to me!! (with some help from my mom, and sister) I am so very grateful for her friendship. She is truly amazing and I am one lucky chick to be able to call her my friend. Oh and her daughter, Rylee, is Lilly's bestie. They are going to be double trouble in a couple years!! : )

Oh and by the way - Lilly is doing good. Her nose is still running like crazy, but we still have about 5 more days of antibiotics. Lets hope it clears up before surgery. They won't have to postpone it for that, but it will probably be miserable for her if her nose is constantly dripping.


We love you, Lilly!

Monday, March 14, 2011

Quick update

I figured I would update real fast while I am waiting on my load of laundry to finish in the washer, so I can switch it to the dryer. It's late, hope this all makes sense. : )

Lilly visited Dr. Nash on Monday and got her synagis shot. : ( She did fine, but was cranky for a few hours afterward.

On Tuesday, Emily, Lilly and I went and picked up donations for door prizes at the will all be very happy with the outcome!

Wednesday, we visited Dr. Hess. She said everything is a-ok for surgery, and she will see us a couple weeks after Lilly gets out of the hospital. I was a little surprised that she won't be visiting and checking up on Lilly while she is in the hospital, but she said Dr. Tam (the surgeon) and her other colleagues will take good care of her.

Thursday was low-key, but both Lilly and I were feeling a little bit under the weather.

Lilly and I both visited the dr on Friday. Lilly has yet another ear infection in BOTH ears and I am battling a nasty sinus infection. I am 100x better after a couple doses out of a Z-pak and Lilly seems to be doing much better with her Cedax and nightly dose of Zrytec. Her nose is still a bit runny, but not near as bad as before the meds. (One more reason to hopefully coordinate the heart surgery with getting tubes in her ears.)

Lilly's Buffalo Wild Wings fundraiser is tomorrow!! 2017 South Main Street Keller, TX 76248

I will be there at 11 and stay a couple hours, and then Chelsea and I will both be back around 6pm. Carter Bloodcare will be there doing a blood drive for Lilly from 11:30-3:30. BWW is donating 10% of total food sales from whoever comes in with a "Lilly coupon". If you don't have one, we will be in front of the building handing them out. We can't technically hand them out in front of the door, but they said we could hand them out in front of the Carter Bloodcare bus - which will be in front of the front door. : )

The walk/run will be Saturday! I will have more info in my next blog about that. The main thing is that it's at 8:30am at Bear Creek Park in Keller.  400 Bear Creek Parkway Keller, TX. $10 for the 1-mile and $15 for the 3-mile. Register Here!

I must go shower, change the clothes over, and get to bed - busy, busy day tomorrow. I hope to see all of your lovely faces at BWW!


We love you, Lilly!

Sunday, March 6, 2011


Friday night was awesome! We had around 150 people there and raised enough money to pay off 2 of Lilly's current doctor bills! We had karaoke and great service. I know some tables had to wait a little while to get a menu and a drink, but hey, they have only been open 3.5 weeks and it was one of the server's first night. All in all I think it was a huge success. I can't wait for the next one!

Speaking of next one, we will be at Buffalo Wild Wings in Keller on March 14. That's on a monday - a week from tomorrow. If you'd like a coupon, just let me know and I'll email it to you. BWW is a little different from Napoli's in that you have to have a coupon stating you are there for Lilly, and they only give 10% of food sales, not total sales. Still hoping to get another bill paid off with what we raise.

The walk/run on the 19th is coming along and we have some fun stuff planned. We also just recently learned that there will be a benefit softball tournament on April 16th in Grapevine!

We are so very blessed to have so many people willing and wanting to help us. I have a lot of "thank yous" to write! : )

That's about all I have for tonight. Lilly is doing great, although her little teeth have been bothering her today. I think she's got another one about to poke through the skin. We go tomorrow to Dr. Nash to get her synagis shot (RSV vaccine) and to Dr. Hess on Wednesday for one last check-up before surgery. I will keep you updated on both of those visits.

Again, thank you all for your love, support, and prayers. Also, while you're praying for Lilly, if you could say a quick prayer for my cousin Tiffany, that would be great. She's going through some difficult times and could really use some thoughts and prayers for healing and understanding. Thanks a bunch!

We love you, Lilly!

Friday, March 4, 2011

It's been a long day...

Lilly had her sedated ECHO today at Children's Medical Center of Dallas. It was definitely different from her last sedated echo! She was not to eat or drink anything past 6 am - her appointment was at 12:30. Surprisingly, she did really well for not eating for so long. She didn't cry until after the medication was administered, and I think it was because she finally got something in her mouth and wanted more. It was very hard watching her cry so hard, and not be able to do anything about it. She also looked drunk. Cute because her little eyes we kinda droopy, but horrible because she was SO out of it. I hate that feeling - I can't imagine a 10 month old enjoying it.

After we FINALLY got her to quit crying and fall asleep (about 30 minutes) we were able to lay her down on a bed for the ECHO. This is where it got scary. Her oxygen level dropped and she had spaced-out, labored breathing. I was terrified that something was wrong. The nurse immediately got a couple of doctors in the room and one of them got the oxygen going in her face. They began the echo, but all I could look at was my baby lying limp and not breathing so well.

They kept the oxygen on her the entire time until it was time to wake her up. They cut the ECHO short and we began waking her up after only about 20 minutes. I think they usually take closer to an hour to do these, but were a little concerned of her levels. We put a cold washcloth on her to try to help wake her up, but she was OUT. It took a good 30 minutes to get her to open her eyes. We poked, tickled, laughed, sang - you name it, she was not waking up. Chelsea finally nom-nomed on her neck and she woke up. Then the crying began again.

We were able to get her to drink some pedialyte and apple juice, but couldn't give her any formula yet. She continued with the crying and moving around uncontrollably. She couldn't really hold her head on her own, so we were having to help her. She was just so out of it...I hated seeing her like that.

After about 20 minutes of holding the pedialyte and apple juice down, we were able to give her some formula. She ate about 4 ounces and seemed great. She was still crying a little, but not near what she had been. After about 20 more minutes we were getting up to be discharged and Lilly decided to vomit...everywhere. The crying started again, which is understandable.

So we sat back down and comforted her. Gave her some more pedialyte and apple juice and sat some more. After about 30 - 45 minutes we were able to leave. She slept the entire way home and for about an hour once we got home. Chelsea accidently woke her up by trying to move her from our bed to hers (I was napping with her), and her eyes popped open and she was ready to play. She was still having a hard time with balancing and kept falling over while playing...which caused her to start crying. Even though I know she was still very tired, she stayed up for quite some time until we finally decided to put her to bed. All it took was a bottle and some snuggle time with daddy and she was out.

I hated seeing her like this. I know this was probably God's way of preparing me for the 22nd, but I did not like it. The good thing is that Dr. Thankavel was able to see the aortic valve leak and agree with all of Dr. Hess' opinions. She wished us well and told us to contact her if she could be of any more help. We will be staying with Dr. Hess at Cook's but would recommend Dr. Thankavel to any one of our friends or family.

So everything is set. Lilly's surgery will be on March 22 at Cook Children's in Ft. Worth. I am so nervous. I think reality is starting to hit a little bit. I cried a tiny bit on my way home the other night when Lilly wasn't in the car and my radio was up just about as loud as it would go. That is one of my stress relievers. I just belt any song at the top of my lungs...even though I can't carry a tune whatsoever. I'm pretty sure there was a guy at a light just staring at me and laughing hysterically. Oh well...glad I gave him a laugh. : )

Tomorrow night is the fundraiser at Napoli's. I am VERY excited! Please come out and join us for dinner and drinks. 7716 Davis Blvd. North Richland Hills, TX 76182 We'll also have karaoke there! The only thing I ask is that everyone be patient with the staff. It is a small place and they aren't used to big crowds yet. I have total faith in them, I just want to make sure everyone knows it may be more than 60 seconds before they get your order to you. : )

Thank you all for your love, support, and prayers. We wouldn't be able to get through all of this if it weren't for you! Goodnight everyone.

We love you, Lilly!