7/25/08 - Making Progress & AWESOME IDEA!!!

Today was another great day of progress. Even though Kayleigh is plugging away on the Bubble CPAP, her oxygen was weaned down to around 22-28% all day long. She only desated a couple times throughout the day, but picked herself back up. They said that if they can keep her below 30% for a couple days, they will try the nasal cannula again. There is definitely no rush though because we want to focus on her growth more than anything.

They have increased her feeds to 9ml because she continues to tolerate the feeds really well. However they are going to lengthen the time to an hour that they feed her because they notice she desats more when it is given to her in a shorter time period. I guess it backs up and she gets a full tummy. She pooped a couple times today though, so that only means they will increase it again tomorrow. The more food we can give her, the quicker she will grow so we can get the surgery completed to insert the pulmonary band. The band is there to limit the amount of fluid build up in her lungs before we can do the surgery to close her VSD (Hole in lower heart chamber). We have to get to 1000 grams first for the band, but we are almost there. I just called and she weighed in at 759 grams which is 1 pound and 10.8 ounces still, like last night.

The awesome news is, the respiratory nurses said her breathing is sounding great and that is why they stopped the Lasix yesterday. On top of that, the cardiologist have stopped the Digoxyn too because her heart is sounding good and she is not showing any signs of distress. Both of those medicines were used to help her apnea issues by pushing the heart a little harder to deliver oxygen throughout the body (Digoxyn), while removing the excess fluid in her lungs (Lasix). So now we will just need to pray that she continues to do well so she doesn't have to go back on those medicines. If she shows any sign of issues, they will do an x-ray and a echocardiogram to determine what to do.

Aimee got to do Kangaroo care for about 20 minutes today which is more than before. We keep increasing it everytime we do it, so that is progress. We got some good photos and video, so I hope everyone enjoys it. I was able to set Brittany in the isolette next to Kayleigh to really show how tiny she still is. If you go to a store that sells Webkins, look at the Cocker Spaniel and you will get a true understanding of how tiny she is.

***There were several people that asked if we were selling the bracelets and at first we decided we didn't want to add another thing to our plates, but then we figured since so many people wanted one already, that we should do somewhat of a fundraiser for Kayleigh. So Aimee and I thought that we would put the money raised towards something that Kayleigh could use when she comes home from the hospital and everyone who contributed could sport a pink bracelet to pull for Kayleigh. Also, what I think would be a great idea is to have everyone who contributed in the fundraiser, email me a photo of your family along with a note to Kayleigh so we can put them all in a scrap book. I think it would be really really awesome if everyone took photos with their bracelets on so we can use those photos. That way Kayleigh will always remember the people she had pulling for her for the rest of her life. We decided each bracelet would cost $5.00 and we will be putting in an order over the next week. So if you are interested, please click on this link - "Get a Kayleigh Bracelet" at the top right on the side tool bar. Don't forget to add your address so we know where to send the bracelets. Over time, I will let everyone who bought bracelets know the deadline about when to get your photos in along with your note.

I hope everyone is doing well. Thank you all for your prayers and we wish you a wonderful weekend. If you get a chance, Brandon wanted me to tell everyone to check out his blog tonight as we did some home videos that will give you quite a laugh. We had a blast putting them together, so I hope you all enjoy. (Click here to see his blog)

The Freemans


Anonymous said...

Ok, first of all, she is tiny...i mean I knew she was, then I watched the video and she is TINY! I thought Parker was tiny...wow....but so beautiful...she is very beautiful! Those beeps and noises in the video are all too familar! As is the CPAP elephant trunk, as I named it!

Glad to hear she is doing well, each hurdle she jumps is something to celebrate.

I like your idea of selling wristbands...I should steal your idea ;) One of these days when I get 5 bucks, I will get one!


The Baldwin Family said...

What a WONDERFUL idea and an even better day. I am so excited to read about all the progress Kayleigh is making. She's is such a remarkable, miracle baby girl.

Our thoughts and prayers continue to be with you. Have a wonderful weekend spending time with your precious daughter.

Kim, Stephen & Zachary Baldwin

Anonymous said...

I have been a total lurker since the first day Aimee posted on the Ultrasound boards. I usually just read and never post. I keep Kayleigh in my prayers every night. I just had to post and say I am excited to get my little pink bracelet in the mail. I just bought 1!!! I told my mother and mother-in-law about this and they plan on coming on here and buying one to help support Kayleigh as well.

annaandallysmom said...

I am so thankful for the progress she is making!! My prayers and thoughts continue to be with her and your family.

God Bless,

Unknown said...

She's growing well!! And the bracelets idea is awsome! I placed an order although it's listed under Rodney Morton....it's me. I wish I would have though of something like that when Carly was there! Not much longer till she hits the 2 pound mark!! She looks amazing. And I love the video. That CPAP hat can be difficult to contend with while kangarooing! Hope you guys have a good day again today.


Robin E. Kitson said...

Cousin Julia says " I'm glad she has gained weight", She's such a pretty baby.