HAPPY 5 MONTHS OLD!!!!
Five months in the NICU is too long for anyone! If you are currently in the NICU, hang in there and know that Aimee and I will be here if you need ANYTHING!!! You can email us for questions or to vent as we know how stressful and exciting the ups and downs can be. If you want to know how we stay so strong, the answer is God and we highly recommend you getting in touch with Him to help you through this.
Mathew 19:26 Jesus looked at them and said, "With man this is impossible, but with God all things are possible."
Aimee and I are pleased to see some progression throughout the day. It is not a whole lot, but it is better than none at all. Kayleigh's heart rate came up a little bit, so at rest it is in the 90's now and when she is active, it is in the low 100's. They are still not sure why her heart rate is so low, but everything else checked out fine on the echocardiogram which gives the doctors nothing to worry about. Kayleigh's oxygen has been dropped to around 42% to allow her sats to stay above 90, which is fantastic. If she keeps that up, they will start to wean her off the nitric and start her back on the Viagra.
They are going to follow the same steps to wean her off everything as they did for the cardiac cath procedure and the open heart surgery when she was on the nitric. It may take some time, but the odds are in our favor that she will be off of everything in no time. They have written an order to start feeding Kayleigh tomorrow. I am not sure how much they are going to start off with, but that is a step in the right direction. The nurses have had to give Kayleigh some Adavan to calm her down a little today since she has gotten irritable several times. They noticed Kayleigh getting upset when there is loud noise or a lot of light, so they have tried to minimize all of that as much as possible. I am glad that we have a corner spot in the NICU where we are not wedged in between two other isolettes. That doesn't make for much room and it is one of those things that just causes more stress.
One of the other things that has been driving Kayleigh insane are the vent tube and the repogal tube that go down her throat. Both of them gag Kayleigh and cause her to want to grab a hold of them and pull them out. I know for a fact that once they remove those, she will be much more comfortable and relaxed. They actually removed the repogal tube tonight since they were not pulling much drainage off of her tummy. When we were taking her temperature and changing her diaper tonight, she was a little less agitated than normal which makes us feel a lot better. Lately, we have not been able to touch or talk to her much because her sats would drop quickly, but today we were able to. Since the echocardiogram came back showing that Kayleigh's pressures have dropped back down in to the 40's, she is less likely to go in to a hypertension episode when you touch/stimulate her.
WHEW! Today was a much better day on the stress level and such a blessing that Kayleigh had a great day of progression. I just hope the antibiotics do their job quickly so Kayleigh can get off of them and not have to risk the side effects sending her in to another plummet. She is doing really well so far and we just hope that she continues to get better. All I have to say is that all the prayers are helping Kayleigh jump over these hurdles. She is such a strong person and continues to show everyone just how amazing she is and will continue to be. We certainly have our hands full!
HERE IS MY EXCITING NEW IDEA THAT INCLUDES EVERYONE!!!!!!!
First of all, thank you all for voting on whether or not we should include our posts in Kayleigh's book. I have gotten some great ideas and I plan to use all of them to make my book more creative and exciting. I should finish the book shortly after Kayleigh comes home, but then the editing will take more time than it did to write it. It is going to be amazing though!
Okay now for my AWESOME idea...From now until the day this book is published and put on the shelves, everyone who has and does buy a bracelet will not only send in a photo to be put in to Kayleigh's kick butt scrap book, but will be put in to Kayleigh's book itself. I plan on taking up as many pages as possible to add every single one of Kayleigh's followers/prayer warriors wearing their Kayleigh bracelets so the world can see how many lives Kayleigh has touched. Of course we will not be publishing this book for a little while, but once you get your bracelet and take your photo, I will save ALL the photos in a file and have them ready to be added to the book. It will be so touching for everyone who buys the book to see all the support we have gotten through our amazing journey. What do you think??? I feel it would be so powerful for readers to see how inspiring Kayleigh was to all of you. So if you have not gotten your bracelets yet, get them now and send in your photos ASAP!!! Thank you so much!!!!
The Freemans :)
The Freemans :)