Lily's Giraffe

November 14, 2009 - The nurses seem happy today for the progress Lily is making. Her IV is gone! Very exciting! She was off the CPAP for 5 hours today. That is terrific progress for our little girl. She is still in the Giraffe bed but she no longer needs the humidity. This is also a good step forward. She is keeping herself warm. She is now eating 17 CCs and growing like crazy.
November 17, 2009 - Lily is still growing and eating more all the time. She is up to 27 CCs at each feeding. She weighs 2 pounds 9 ounces and is 16 inches long now. She has gained back all her birth weight and added some as well. Way to go Lily!!!!

Update on Jamie

We do on occasion have updates on Jamie. She went to the doctor on November 13 for a check-up. Her swelling was pretty much gone, which is fantastic! And her blood pressure was down to 122 over 86! Much better than it had been before. We love good news about you too Jamie!!!

Our Lily and her Lily Pad

November 8, 2009 We had Jamie's baby shower today. She got a lot of nice things. I think it was good for her to go and enjoy the company of so many people. And to be able to open her presents for Lily. A pretty normal event compared to everything else that has been going on.
Jamie and Josh went to see Lily before the shower and gave us an update. Lily's oxygen was good and at 21% on the ventillator which is really good. Jamie was also excited that she may be able to hold Lily later in the day. That is very exciting news.
It was really cool to see Jamie hold Lily for the first time. The next week went by so fast. We got to celebrate Christmas and visit Lily every day. I imagine the nurses got a bit tired of seeing John and I and us asking so many questions all the time. We just knew that soon we would be gone and wouldn't be able to do it anymore. Any piece of information we could get and every picture we could have helped to make the leaving a little easier.

The Waiting and Watching and Praying

November 3, 2009 John sent an update at 8:35 AM that Lily was doing good. Half of the jaundice lights were off and maybe turn rest off soon. They were still working on weaning her off of the oscillating ventillator in hopes of converting back to standard ventillator. The 2:00 AM CO2 level was 37. Another check due around 9:00 AM. By 10:00 AM Lily was on the regular ventillator and were using very low settings. They may have to turn it up some if her CO2 levels aren't good but hoping to keep it low and possibly take her off all together depending on how she responds. They will probably use jaundice lights some again tonight. They listened to her heart and she continues to sound good.
Around 12:30 PM the nurse gave Lily some pink bedding. Before that she had plain white. It was nice to get some color in the bed. Made her seem more like a baby. It helped brighten the mood and make it seem less stressful. All those wires and tubes hooked up to her could be a bit intimidating so anything that gave a baby feel to her helped.
Around 7:47 PM Lily's CO2 level was 41 which is great. They are talking of lowering the machine even more in hopes of getting her off it and breathing on her own. She is doing great with the meds for her heart, no problems with the kidneys from the medicine.
I think this was the first night everyone actually went home for a good nights sleep and left her alone at the hospital. It was a bit difficult to do but we all needed the rest. Especially Jamie because she was still recovering from all the trauma that her body had gone through with the pre-eclapmsia and then the C-section. We know there is a long road ahead but everything possible is being done to help Lily grow into a strong little girl.

Rough Day

Today was a bit of a rough day at work. I was taking pictures at Luigi's Garage and a couple came up and just wanted to get a picture of the cars. It was pouring down rain but they ran over so that they could take it anyway. We told them to go on in between the cars so they could get dry and we could take their picture. They were happy to do it. Then they came out and the lady shared that cars was going to be the design for their grandson's bedroom. But last year on the way home from Disney his parents had been in a bad car accident and the baby just wasn't old enough to survive the crash. If he had been two weeks further along in gestation he probably would have made it. The grandparents got to hold him for a while. He lived for two days but just couldn't make it any longer. It was so hard to talk to them and then to think about little Lily. I thank God everyday that she was as far as long as she was so that she is still with us. And I thank God every day that my Jamie made it through as well. What a miracle those two are for me. Thankfully we can have a monkey room for our little monkey and her mommy.
Any way thought I'd share how my day went and the things that came to mind.

Up and Out of Here

November 2, 2009 Lily's oxygen level was around 93 and her CO2 was 48 at 12:07 AM. Getting more normal levels now that she is on the oscilating ventilator.

They were going to check Lily's CO2 around 9:00 AM but it was stressing her out too much when they changed the tape so they waited.

A new day dawns and two lovely ladies still in the hospital. Jamie had an x-ray of her lungs done around 9:15 AM. We got a message from John around 9:53 AM that Lily's CO2 was 30 so they may be able to wean her off the special machine and onto the regular one today. Her color is getting to be a more normal shade as well which is good.

We had some humor today. John said that Lily was giving him the Rock hand sign and then the Spock hand sign.

At 11:04 AM Jamie had her breathing excercise and got up to the 2000 mark The therapist said she is doing real good. Her lungs sounds better. Just a little mucous. Jamie is coughing good which helps bring up the mucous.

AT 1:11 PM the ultrasound showed a heart issue that they should be able to take care of with medicine over a 36 hour period. As long as her kidneys can handle the medicine. She also has some minor blood in the head that they will monitor.

John left Josh at the hospital to spend time with Lily while he went to get some food.

Gosh what a day of updates! And what a long day it seems to have been. Lily is one tough cookie. Grandpa was very impressed!

At 2:54 PM Lily's xry was a little better than the morning. They had a little trouble putting an IV in but that's not surprising because her little veins are sooooo small. Poor little baby.

At 3:20 PM Jame had another breathing treatment. Her temperature was normal but her blood pressure was still up. It was 145/95.

I know Jamie wanted to leave as soon as she could to go over to see Lily but I was so worried that they would let her out earlier than was good for her. They hadn't even really had her walking the halls to make sure she was okay from the surgery before they were ready to send her out the door. But she turned out okay. Just me being the usual worry-wart.

Around 4:30 PM we got a message from John that they had started weaning her off the oscillating ventillator. Lily was still under the lights for the jaundice and had her ski goggles on. She looked very fashionable.

At 9:00 Pm the doctor came in to say that if Lily continues doing so good they will try to put her on a conventional ventillator! Her blood gasses were so good that they weren't even scheduling special tests for them but just going with what the monitor says.