10/22/08 - NEW CASA!!!

Somethings wrong with this photo...(Is that a third foot?) ha!

That's right!!! Kayleigh has been moved out of her isolette and into a bassinet. She has held her temperature great so far and slept much better this afternoon. It is such a great feeling to know she is out of that cage and has the ability to look around more. They actually decided to move her to a small crib and will do so tomorrow because she has her music machine and other things that take up a lot of room. We are fine with that upgrade too because I think the bassinets aren't that spacious either.

Please forgive me, but I am not one to complain on here. Although, I will say that we were both struck with our very first service disappointment today. On her blue binder that is filled out by every nurse (all day long) that Kayleigh has, is a note that says "Parents want to be present when Kayleigh is moved from the isolette to a bassinet" I mean, it is a very big step for Kayleigh and we want to be apart of that to celebrate. That note has been on Kayleigh's blue book for over a month and when we showed up today, Kayleigh had already been moved into the bassinet. I was very disappointed and hurt. Thanks to Aimee or I probably would have said something smart to the nurse. But, what can you do for something that has already been done? It won't make such a special moment as special anymore.

Anyhow, Kayleigh is doing amazing today and I just had to show off a ton of photos. I actually took 132 photos and I picked the best ones out of the bunch to share with everyone. Kayleigh grew 35 grams last night. She weighs 1715 grams = (3 lbs - 12.5 oz). They also decided to wean her off her oxygen all day today and they are currently on .1 liter of flow with 65% oxygen. She has been eating fantastic and since she is starting to get really cranky about 30-60 minutes before her scheduled feeding times, they decided to change her schedule to feeding on demand. That means, she eats when she is hungry. She took to Aimee's breast very well this afternoon and must have gotten a lot because she didn't want much of the bottle afterwards. This evening, she took 50 mls, so she is tearing it up!!! We are just amazed by the progress she is having. Everyone was right when they said that out of nowhere, she will begin to take off and that is exactly what is happening right now.

The update about the cardiac cath is up in the air right now. They said she will have it done before she goes home, but then we are not sure what the rush is. I brought up a good point to our doctor today and he agreed with what I said and is taking it to the cardiologist. That always makes you feel good. What I brought up was, if Kayleigh heart/lung pressures are stable, why are we rushing to get the cath procedure done right now when we still have to wait for Kayleigh to grow to get the VSD repaired? If 4 lbs is the minimum size Kayleigh has to be to have the VSD surgery performed, why are we tempting fate at the minimum size when things are curently stable. Let's wait until she grows a lot more, so she can withstand the surgery better at a larger size, and when intervention is needed to help the pressure before something bad occurs, then they can step in and do the surgery. What is the point of doing it now, for our satisfaction to know it is done and we can move on or for Kayleigh best interests? If this surgery can be done in 2-3 months, then let's monitor her pressures and wait for her to be at a size that can tolerate anesthesia better. We all know what happened after the past surgery on the bowels when she took a turn for the worse while recovering from the evasiveness of the surgery.

Anyhow, it makes sense and our doctor is going to talk to the cardiologist about all of it and let us know tomorrow. I am thinking that if we wait to do the surgery and Kayleigh is holding her temp, she could come home very soon. We would just have to be trained on what signs to look for if her heart/lung pressures change direction. Not too much to stress about, right? ha!

We just want what is best for Kayleigh, not our satisfaction so if she has to wait, she has to wait.

For all those who ordered bracelets recently, we just had a large shipment come in, so we will be sending those out. I hope everyone else got theirs okay. If you didn't, please email me at(Adam@TeamFreemanProperties.com) so we can fix the issue. Thank you all so much for ordering them. We were amazed at all the people who bought one and cared so much to share in Kayleigh's journey like that. It is certainly a blessing to have each and every one of you in our lives. Thank you! Thank you! Thank you! I truly can't say it enough.

God Bless,

The Freemans :)


Anonymous said...

Aww she looks so happy in her new bed! She really is growing!


Anonymous said...

Such a cutie, love the third foot. I'm sorry about the dissapointment you had in not seeing her move, but she looks awesome in her new pad!
I think you're right in questioning the cath right now...she seems quite stable..I am an nurse, who worked Adult Cardio-thoracic ICU, so peds is definitely not my forte...however, the surgeons would always teach us "treat the patient not the numbers"...in other words, pulmonary pressures are numbers and at this point she is stable whatever they might be, so if it's not going to effect treatment...anyways, so great she has great parents to advocate for her! Prayers continue, Leslie--CT

Anonymous said...

Yay, Kayleigh! Snug as a bug in a rug! She looks great in her bassinet. I bet she will look even better in a crib. ;-)