10/21/08 - Surgery Postponed

Unfortunately the surgery is postponed tomorrow morning, but it is definitely for a good reason. Another child is in dire need of the procedure, more than Kayleigh is at this point. So, we are more than happy to give up our spot to someone who needs it more.

The cardiologist called me today and basically told me that he can monitor Kayleigh's heart pressure through an ultrasound and since Kayleigh's heart/lung pressures are stable right now, they don't feel it is necessary to perform the cardiac catheter at this point. Now, I am not positive if he would rather postpone the surgery or wait to see more growth from Kayleigh before they decide to do the procedure. His comment was, if the procedure showed that they could close the VSD (hole in her heart) without causing problems with the lung pressures, she still needs to be over 4lbs to do that surgery. So, waiting until that point would only give the lung pressures more of an opportunity to come down on it's own.

Now, we wrestle with the idea of her coming home earlier since we don't have to do the procedure right now, but I won't know that decision until tomorrow. I do know they have to bring Kayleigh out of the isolette to see if she can hold her temperature well. Plus, we would have to learn the signs of complications in case she were to start showing pressure changes in either the lungs or the heart. We will learn more tomorrow when we speak with the doctor and find out his orders.

We are just happy that Kayleigh is stable enough to postpone the procedure for a time well suited to make a strategic decision with her current situation. Growth seems to be the only thing holding us back, but she did grow another 10 grams last night putting her at 1680 grams = (3 lbs - 11.3 oz). She is slowly getting to that 4 pound mark, but any weight gain with stable lung/heart pressure is completely fine with me. We know she will get to the desired weight for the doctors to make a perfectly planned decision.

Other than that, she is doing great. She took no less than 33 mls on all of her feeds today and she is allotted up to 40mls. She threw a hissy fit when we got there this afternoon, but once I got that bottle in her mouth, she was more than satisfied.

Aimee had an appointment this morning and I did as well, but we had to go in separate directions to be able to attend both appointments. We normally do everything together, well...besides going to the bathroom. But, Aimee stopped by Wal-Mart before her appointment and found out that they have a larger preemie section than you would think. She bought an awesome onesie for Kayleigh that says "My Heart Belongs to Daddy". It was perfect. Speaking of perfect, a couple of Kayleigh's friends who follow the blog have made Kayleigh some awesome outfits for her to wear. I have to show them off and I thank you all so much for making them for her. These are awesome. The two onesies are made from Bright Little Beginnings and from a Mom who is part of the Crochetville Organization. Thank you! Thank you! Thank you!







Thank you all for your prayers and support and I hope to bring good news the next time I post.

God Bless,

The Freemans :)

3 comments:

Anonymous said...

I've been following your story since the beginning from the BBC board. I'm also a September mommy :-)

I was just reading and wondering if Kayleigh was meant to be small. You said that weight gain is her only hurdle. I know she had lots of issues associated with preemies, but has she been tested for dwarfism? Just watching Little People Big world while reading your blog and wanted to share my idea.

Keep up the good work mommy and daddy!

AliciaJohnson1983 said...

I will pray for her tonight. I hope her surgery goes well! She finally made it to my Natalie's birthweight! Past 3lbs 10.4 oz! Yay, Go Kayleigh! I give you the biggest two thumbs up possible for what a journey you've been through! Those little outfits are beautiful! I love her little smiles in the video. Mine did that to me when they were that tiny. She looked at you like, "I'm not sleeping!" So cute! Wal mart does have quite a few preemie clothes. That's where I got Natalie's. Kmart's preemie clothes aren't preemie! They are newborn with a tag that says preemie. So don't buy theirs! Best of luck to you!

Adam and Aimee Freeman said...

Good Question about dwarfism. From earlier tests done on Kayleigh, they told us that if dwarfism was the case, then the head would be growing unproportionate from the rest of the body. Being that is not the case, it was ruled out. Kayleigh was just sever IUGR (Internal Uterine Growth Restricted) as she wasn't getting enough nutrients from a bad placenta. They are still to this day doing tests on the placenta to give us a better understanding of what went wrong. We have not hear yet, but hope to in the near future so we can get some answers. Thank you so much for your prayers!

Adam Freeman :)