8/24/08 WHAT A CRAZY DAY!!!!

WOW, It is just makes me sick to my stomach how quickly things can turn around in Kayleigh's situation. She had a really good day yesterday and all of a sudden, she started having one of her worst days ever today. It was not looking good at all and then a few hours later, things started going back to normal. It was so crazy!!!

When we arrived to the NICU this morning, we found out that Kayleigh had another eye exam and her ROP prognosis went from a level one to a level three in just a week. It looks like they are talking about doing the laser surgery to save Kayleigh's eye sight, but she will unfortunately lose her peripheral vision. I am not sure when they are going to do this, but it will probably be soon.

On top of that, our nurse (Marsha) who takes care of Kayleigh a lot noticed that Kayleigh was not acting like herself today, as she was very irritable and lethargic. She was having a lot of brady's and desats, where her heart rate would drop rapidly and her oxygen saturation would drop. She turned her oxygen flow up to 5 liters to try and help, but it wasn't helping at all. Her belly was getting a little bigger, but it wasn't any different than the past couple days so we weren't sure if that was the issue. She kept a close eye on her throughout the day and when she couldn't leave Kayleigh's bedside with out her dessating again, Marsha decided to order some tests to be performed on Kayleigh. Kayleigh started aspirating her feedings this afternoon and having more brady's/desats than ever before. Kayleigh has yet to aspirate because everyone would say she was tolerating her feeds fine. So for her to aspirate, Marsha knew something was not right. They did a CBC, blood culture and an x-ray. The CBC came back showing suspicious for an infection. The x-ray showed a ton of gas in her belly and the blood culture has not come back yet, which it usually takes 48 hours. The blood culture will determine what the issue is, but they stopped her feeds again and jump started some antibiotics to be safe. They were talking about skipping the CPAP and putting her straight on the vent because she was not doing well at all with her breathing. I couldn't believe how quickly things took a turn for the worse. They usually don't call us unless their is a problem and they had called us twice from the hospital to tell us she was having a rough time and what their plan of action was. The nurses were all completely shocked with what was going on and when you can pick up on that through their tone of voice, you know it is not good.

This craziness all happened this afternoon, but when we just called up there a minute ago (8:30), Kayleigh seems to be doing fine. WHAT??? I couldn't believe it! Our nurse tonight, Amy says she has seen antibiotics work wonders if they are administered quickly. Amy mentioned that she gave Kayleigh a bath (wipe down) and Kayleigh was very alert and wasn't acting irritable or lethargic at all. She also did not have any desats or brady's in the past couple hours since Amy started her shift. It was if there were no signs that Kayleigh was having any issues at all.

Can you explain that???? What in the world just happened? One minute, you are praying like crazy that you don't lose your little girl and the next, you are completely in shock to hear how well she is doing like nothing ever happened. I was so stressed out that I think I was having an anxiety attack in the car on our way home. I was short of breath and my stomach was turned upside down. I am so ready for this to be over and have Kayleigh home with us. This has certainly been one crazy day!

Please pray that Kayleigh will be okay and she will make it through all this.

With Love,

The Freemans :)


Sam said...

Man, I'm telling you, NICU is rough. I'm sorry she had a bad day, though. It's amazing how quickly our little ones can turn around - both ways - either from really good to really bad, or vice versa. I hope Kayleigh makes another quick recovery.

And you should know, David had to have the laser eye surgery when he was in the NICU. They did it when he was almost three months old. I had to go back and read through my blog to find out, because compared to everything else we went through in the NICU, the laser eye surgery was very minor. I'm sure you'll feel the same way. David handled his fine, his little eye sockets for a little bit bruised, but that's it. I do remember his blood sugar dropped after the surgery, so you might want to make sure they plan on feeding her before she goes in, or at least not skip a feeding.

I hope tomorrow is a better day for you all.

Anonymous said...

Miss Kayleigh certainly keeps you on your toes.

We will be sending up prayers on her behalf. May God send His angels to protect her through the night and bring healing to her little body.

Michella said Kayleigh gets more beautiful every day. The girls enjoy seeing her pictures.

I pray God will calm your nerves and give you strength to endure!

Pennie, Michella and Marissa

Anonymous said...

It is insane how things change one minute to the next and one day to the next. It's really hard, as parents, to digest. Because things can change so so quickly. It happened to parker quite a bit, while never to the extent as Kayleigh, but it really is hard.

But I truly believe if they say that quick of a turn around in her, that she is bouncing back. God is great and mighty and he has Kayleigh in his hands and is healing her each day.

If you need to chat or vent or anything, email me...

Love you guys!

Unknown said...

Sorry to hear Kayleigh was having it rough for a min there. I glad though that things seem better now. I'll continue to pray that she stays well and this dosen't happen again.

As far as ROP. Carly did the same thing no signs one day and not even a week later she had ROP bad enough to go to surgery the next morning. That was definatley an emotional rollercoaster. But we got through it and she did fine. I do remember the nurse for the eye doctor told me that even though babies usually lose their peripheral vision, it happens at such an early age that they don't even notice it as they grow older. Do they know when they are going to do the surgery?

In Christ,

annaandallysmom said...

God heard and answered prayers!!! I will prayer that things continue to get better through the night.

God Bless,

Sarah said...

Wow. I seriously don't know how you guys handle daily life! From the first day you found out something was wrong with your little girl all the way until now? I KNOW I could not do it. I was in for my 20 week ultrasound a couple weeks ago and the doc called me back a few days later saying I need another ultrasound at 24 weeks to check my little girls heart again. They say nothing looks abnormal or wrong, they just want "clearer pictures". . . and I've been stressed out so bad and so upset- and nothing is even WRONG (that we know of yet). Everything is absolutely been perfect so far and a good thing that is because I know I can't handle even the smallest bumps in the road. Not without God! You guys are a huge inspiration as to his strength and ability to keep us going through the impossible! Thank you for your amazing example :-)

-youngwife from babycenter.

Robin E. Kitson said...

Gosh I am sorry you guys had a bad day. All I know to do is pray the bad days get fewer and she recovers.