11/19/08 - Superstition or Coincidence?

Every time...Every-SINGLE-time we go to do something for Kayleigh at Babies-R-US, something bad happens and whenever something bad happens, we end up finding ourselves eating at Steak-N-Shake. When we first found out the news Kayleigh was growing behind and things weren't looking too good, we ate at Steak-N-Shake. When we found out Kayleigh had a seriously progressing retinopathy issue and she could possibly go blind, we ate at Steak-N-Shake. When we first started to register at Babies-R-Us, Kayleigh's bowels weren't moving correctly and the docs made the decision to do the gastrointestinal exploratory surgery. It also happened when we completed the registry before Kayleigh had the bad reaction to the cardiac cath procedure.

Well tonight, Aimee and I stopped by Babies-R-Us to get a pad for our awesome changing table (Thank you Aunt Kathy and Uncle Brian!!!) and a couple other things. We then went up to spend some time with Kayleigh only to find out that her stitches weren't taken out last night, her CVL line that is in her tummy wasn't taken out either, she didn't get the echocardiogram like she was supposed to today, her hemoglobin is somewhat low and may need another transfusion, and finally she was not interested in her bottle much more today than normal which required them to gavage the rest through her tube. All the above are not good signs right before we are planning to come home. So needless to say, we left and went to eat at Steak-N-Shake.

We spoke to the nurse practitioner, but really didn't get any answers as to what in the world is going on. All we could pan out from this whole situation is that Kayleigh's body is learning to work with her newly improved heart. I mean, you can't race a car with a brand new engine because you have to break it in first or it will cause more damage. We are just not sure why she is struggling with her feedings because she was taking more of her bottle just after surgery than she is right now. The good thing is, she is gaining some good weight, but she can't come home if she doesn't eat from a bottle (She weighed 3lb - 12 oz tonight) They could put a line in to her stomach and we could feed her through that if she doesn't bottle feed, but we don't want to have to do that at all. We would rather her stay in the hospital longer and fix the issue at hand. But, like I said, we don't have answers yet and hopefully they will figure it out soon.

One thing I noticed tonight that just stuck out to me for some odd reason was her breathing. When she was at complete rest, she would breath deep and hard for a few breathes before relaxing again. This would happen ever so often, but at times she was not working hard. It may be nothing, but my gut told me something and we all have learned to listen to your gut so I made sure I spoke up to the nurse practitioner and I will do the same to the doctors tomorrow.

Let's just hope and pray this is nothing big so we can fix the problem and still plan on our glorious homecoming this week. Aimee and I promise to NEVER buy anything else from Babies-R-Us until she comes home. Also, we plan to get back on our training regimen when Kayleigh comes home, so we can forget about Steak-N-Shake for a while as well.

Aimee wanted me to thank EVERYONE for the responses she got from last nights post. She apologizes for not being able to respond to everyone as she got well over 60+ emails, which she spent reading every single one of those all morning about tips on what to do for her situation. Aimee has spoken to a lactation consultant before and they gave her the larger flanges. She got some Lansinoh and even started to use her own breast milk as a healing agent too. Aimee also mentioned she is pumping on the lowest setting on her Medela pump, which was questioned by several people. She appreciates everyone tremendously and with all the ideas, we are sure this problem will be fixed. Hopefully it is just sooner than later because her poor boobies don't feel good at all :(

Thank you all so much! Please pray that things will clear up with Kayleigh so we can continue to plan on a unbelievable homecoming very soon. Whether it be this week or next, we just want Kayleigh to get on the right track and stay healthy for many many years to come. I did have a talk with Kayleigh tonight and told her to cut this funny business out and it's time to come home. We are all tired and emotionally worn out for anymore issues to come about, so please pray that this will all be some fluke and Kayleigh was just having a bad day like all of us have every now and then. We appreciate all of your prayers as you know how true and powerful those prayers can be.

Thank you all for everything and God Bless!!!

The Freemans :)