7/2/08 - The Roller Coaster Continues!

Today was a little stressful, but things are under control. Kayleigh started the day off by going back on the CPAP to help with her sleep apnea. Her oxygen was set at a normal setting as if she was breathing in air like you and I do. They only are using the CPAP to help the flow of air into her lungs which helps her not to forget to breath. It is good to see she is going to get much better rest, but no one wants to see her take steps backwards. They said there will be set backs, so I just need to get used to that.

The nurse mentioned that because she was having more sleep apnea episodes, it may be caused by an infection of some sort. So they have done some blood work to get things tested for infections. That should come back in the next day or two. There was a quick test that they took to see if it was some sort of major infection, but I forgot what they called it. The good news is, that test came back clear with no issues. We are really praying that the blood tests come back normal with no infections in the blood.

While they were running some tests, they noticed her red blood cell count was low so she had to get a series of blood transfusions. She had one transfusion this morning and they were doing another later this afternoon. The first one went really well and was done with out any issues. She has two IV's, one for nutrients and the other for blood work, so it was easy to access and get her the blood she needed.

Other than that, she is doing really well. It was good to see her today resting well without any bad apnea spells. She had a couple earlier today, but that was before they put her back on the CPAP. With the CPAP, she can still override the system and breath on her own which to me that is so much better. Seeing her stop breathing and struggle to catch back up seems like it would just wear her energy out and not allow her to get the deep sleep that she needs to help her grow.

Aimee is on the phone with the NICU right now to get an evening update. They do her vitals at 8 and 2 in the AM and PM, so we like to see how things are going every chance we can get a new update. She just got off the phone and I guess I spoke too soon. After we left late this afternoon, the nurse said she started to have some more bad spells with her apnea, so they put her on the ventilator which is a more assisted breathing machine. It is a even further step down from the CPAP, but whatever it takes to help my peanut. The nurse said to Aimee on the phone that it was a shock to see Kayleigh breathing on her own in the first place and that it is completely normal for a preemie of this age to be on the ventilator right away. We were told this may happen, but of course we all think she would be strong enough to not to struggle at all. The nurse mentioned that Kayleigh may have just worn her little self out this week trying to breath on her own. All we can hope and pray for is that she will not have sleep apnea episodes while on the ventilator. That will not be good.
All we ask is for everyone to pray pray pray for our little girl right now. We need her lungs to mature quick, so we can jump over this hurdle. Thank you everyone so much for being there for us. I will update you as soon as I hear something.


Kimberly (Anthony's Mom) said...

My thoughts are with you guys. She's had such a busy week. She's probably just worn out. Being on the vent will give her rest and I bet you she will grow a bit more while on it cause she will be burning less calories. She's so strong. The first month is always the hardest.... at least in our experience it was.


Anonymous said...

Adam and Amiee...I can tell you that all the way from California I'm sending so many prayers and wishes to you guys and mostly to Kayleigh! I hope her night goes okay and she's able to get some rest and breathe okay. We love you all so much.
Rachel and family.

Unknown said...

NICU is always one step forward two steps back... It is amazing that Kayleigh has gone this long breathing on her own... The vent will help her rest and grow bigger without over-doing it! She can't have apnea while on the vent because it is doing the breathing for her-- so you don't have to worry about that..
I remember EVERY single drive over to the NICU-- the butterflies in my stomach.. The anxiety to just get in there and be reassured that everything was OK.. The mixed emotions.. It's a feeling that only a NICU parent can understand..
Hang in there.. She is doing amazing! I'll keep you all in my prayers!

Sam said...

Well, I'm sorry to hear that she's been put back on the vent. I hope her little lungs will heal quickly so she can be back off - I know you miss her cry already.

David was on a ventilator for the first three months. So the fact that she was able to be off of it for so long is a miracle in itself!

And, I'm sure you've heard it a million times, but NICU life is such an up and down battle - one step forward, two steps back - all kinds of cliches like that. But I'm glad to see that you're blogging it all. Because you *think* you'll always remember the way that felt - but you won't. I still sometimes go back and read through my first blog posts to remember.

Anyways - update us when you can.

Jennifer in NM said...

Adam and Aimee,

I am sorry to hear that she has to be back on the vent. But as all the others have said it is going to help her in the end. The more rest she can get the more she will grow. I remember the nurses in the NICU telling me that Caleb needed to rest as much as possible because of a certain growth hormone that is only excreted during sleep. It was hard but if I got to the NICU and he was sleeping I would not pick him up.

The good news in all of this is that she has not come back for an infection. Caleb was on 2 antibiotics just as a precaution, though his cultures always came back clean. He was on Gentmyacin(SP?) and a general antibiotic. Hopefully the next couple of days will serve as being fruitful.

I always have you guys in my prayers and know that Kayleigh will do just fine. My nephew was born at 28 weeks 21 years ago and is doing good today. So just imagine if they could help a baby that young 21 years ago what they can do today. Kayleigh is in good hands by the nurses, and obviously God had been holding her all this time.

Take care and update when you can.


annaandallysmom said...

I have been following your postings on BabyCenter and on the blog. I just want you to know that my thoughts and prayers are with your family and the precious little baby girl who is such a fighter. My church in Asheville NC is praying for her and she is being held up to Lord all over the US. Keep your heads up and keep looking toward Jesus and he will take you all through this.

God Bless Your Beautiful Family!!!
Monica mncknighten@yahoo.com

Anonymous said...

Dear Kayleigh,
I just want you to know you are loved by so many people, including God. You are like your parents, a survivor. You had the will to be born alive, and you have the will to keep growing.
My prayers will continue for your strength and for your parents to have faith and patience.
Linda Hargreaves

Anonymous said...

I'll continue to pray for your sweet baby girl. I hope she continues to get the rest she needs so her little body can grow strong.


Brandi said...

Adam and Aimee,
im sorry to hear about the vent,but with all the prayers coming from around the united states,maybe even around the world, she will get over this hump in no time! Just think she can get sleep now that she needs and if she can gain 2.5 oz in one day not getting the sleep imagine how she will do with it. Just know there are probably 1,000's of people that have know idea who you guys are, and are praying for your family, and know the story of Kayleigh. Also added to the list of those praying is my grandma's church. So before you know it this hump will pass. Just keep in mind that every day seems long but it also goes extremely fast,it's all ready been a week and a half.
just hang in there,
love you guys,
Brandi and Albert