Things are looking better for Lyla

Things have been looking up the last couple of days! Sunday afternoon she moved out of the icu. For a few days they talked about putting in a picc line where she wouldn't be able to eat for six weeks and have only iv fluids to drain off the fluid from her lungs but luckily they didn't have to do that. The fluid yesterday stopped draining and her chest x-ray looks like it's mostly gone from her lungs. The special formula must be working. Hooray! I was praying that she didn't have to have that, it would have been miserable for her. She has a monitor checking her heart rate rythms that she has some issues with but that is looking better too and she is so much happier with the chest drains out. Things are looking much better the last couple of days, they are talking about her being able to go home in the next few which would be wonderful!

We have seen lots and lots of smiles out of her today! it's good to see her back to herself a little more!

Today her wagon ride put her to sleep!

The iv team that comes to draw her blood every morning bright and early at 4:30 am has nicknamed her "goldie toes" because of her painted toes.

She got to go on a wagon ride around the halls for the first time. She loves looking around and being out of her room for a bit. It's a nice change of scenery for her.

Hotel fun

The kids came up over the weekend and stayed with us at the hotel next to the hospital and we traded going back and forth being with Lyla. They were in heaven, they thought the hotel was the funnest thing ever. I realized we haven't been anywhere staying in a hotel with them since they were all born, so they thought it was the greatest. Ava asked if we could stay at least five nights and wondered when we had to go back home to our house in uath. It was funny they thought we were in a completely different world. They each wanted their credit card (room key) and loved opening doors, getting ice, pushing buttons in the elevators etc. The little things that excite them!

The boys thought the "play phone" was great. Luckily they didn't put an of the right numbers together to call anyone.

They loved throwing pennies into the wish ponds and they thought the colored painted horse outside of the hospital was the best.

There is a big glass hanging chandelier thing when you walk in and Ava said it looked like ramen noodles. I guess she was right, it sort of did.

Rough few days

Lyla has had a rough past few days. We expected there would be some good and bad days. On Wednesday she had a high fever they were trying to figure out why and then in the morning she had a large amount of fluid on her chest x-ray so they had to sedate her again and put in another chest drain in her right side. Then Wednesday afternoon she stopped breathing which was very scary. Code Blue is nothing you ever want to hear over the hospital announcement associated with your child's room number. The response was amazing. In a matter of 30 seconds there were 40 doctors and nurses, 10 different machines and a cart with every imaginable thing you could need at her bedside to help her, which we were very grateful for. I was anything but calm, it was a scary few moments but they got her stable and moved her back to the CICU. They figured that the pressures in her lungs and chest got too high which causes the right part of your heart to kind of freeze up and not pump, is the basic diagnosis. Today she's had some heart rythm issues so they gave her some meds for that. So they're just watching the fluid output from the chest tube now and making sure everything else stays good. Hopefully the weekend will go better for her. We finally got a little smile or two out of her for the first time since the surgery today!

She had a fever so they put a cold washcloth on her head and it looked like she had bunny ears!

We finally get to hold her which is great, although moving her along with all her tubes and wires to your lap is quite a challenge!

The nurses made this cute poster to hang in her room! It tells all about her, they are all so great and kind taking care of Lyla!

Lyla Update

The last couple of days have been good! Today she's had quite a few tubes and wires taken out. She had the ventilator removed yesterday and did great. Today she had two chest drains removed and an iv taken out of her foot. She's now off the sedation meds but she's still very sleepy and not wanting to wake up for long. She's eating an ounce or two every once in a while but she has to have fluids through her iv to help her metabolic gases improve. I can't thank our family enough for helping and watching the kids so we can be with Lyla! We appreciate it and all the trips up to visit her and give her luvs! We really feel so blessed that she's recovering and doing so well! Can't wait until we can hold her in the next day or two!

Thanks to the cousins for all the cute signs and pictures to hang up in her bed!

She got to sit up for just a minute. They want her to cough and clear her throat and lungs a little but it really hurts so it's been hard to get her to!

Surgery day for Lyla

We made it through today! Thanks to so many prayers for Lyla the surgery went well. The surgeon said the two holes in her heart were very large and he filled those in and also had to fill in her pda that was supposed to close up at birth and hadn't and then separated her valves into two and everything went as planned! She hopefully can have the breathing tube removed tomorrow and slowly more tubes as we go. She's hooked up to a million wires and tubes but so far she's doing excellent! It was a very long emotional day, we're relieved it's over and she can be on the mend! I am so grateful for our Heavenly Father watching over and taking care of her, it truly is a miracle that along with all her doctors, surgeons and modern medicine her heart can reapired and she can be made well again. It has been very humbling and overwhelming the love and support we have felt from so many loved ones and family members willing to help us and show their love and concern. We are so blessed and grateful!

Ready To Go

Lyla's all ready for surgery. She had all her pre-op tests done on wednesday and got her sticker and band and ready to come back Friday morning. Poor thing, she had no idea what was coming! Despite not being able to eat she was still so happy in the morning before they took her back.

Her hospital attire! Her face looks a little worried and for good reason.

We painted her toes so she had pretty gold toes for her hospital stay!

The boys giving kisses and luvs the night before!