Sunday, August 30, 2009

6 Days, 6 Nights and Counting

Most of the day I forget that Carolena has such severe heart defects and that we need to watch out for any symptoms of her malrotation. See looks and acts just like a normal infant. In a way I am grateful that we are not currently dealing with more issues. On the other hand every time I remember that she is different I am sad all over again. I know that she will be back in the hospital facing 4 different surgeries...this is not a question of if anymore but when. I really hope we get to stay at home as long as possible before having to go back to the hospital.

Sweet Angel

Of course just to remind us of how precarious our situation is, Kyle contracts the swine flu from school. Total separation between me and Carolena and the boys has been the rule in our house since Friday. Let me just express how awful it is to have to choose between my kiddos. I have one who feels miserable from the flu but I cannot even give him a hug without then having to totally decontaminate myself before handling Carolena again. This does not just mean washing my hands but, taking a shower, changing clothes and using like a gallon of hand sanitizer before even getting near her. Since I am nursing her I would have to do this every 2 hours of the day. So, not really feasible for me to be the one to take care of the sickies. Kyle has been okay with it but last night he wanted me to hug and kiss him. Horrible decision to make whether or not to take the risk. Of course I did give him a kiss on his head and helped with his medicine (which apparently tastes awful) before going to disinfect myself again.

First Day Home

So far Todd has not been sick but just as precaution he has been quarantined with Kyle. Fortunately we are able to shut off half our house for the boys to be in. PG was kind enough to let us use the scamp for the last two night which is where all the boys have been sleeping. Today the boys are back in the house but under very severe restrictions.

Before Lockdown

All of this just reminds me that we have a different life now. One that involves severe restrictions and having to choose between the kiddos. This is never want I ever wanted to happen but it is where we are. I cannot risk Carolena getting sick. Right now she has to take priority. I keep thinking that if all goes well and God answers all of prayers we will be a "normal" family again in a couple years. After Carolena has her heart surgeries and stomach surgery. After she is not so fragile health wise. After we settle in and move forward leaving all the hospital visits behind. I will know we are there when we finally get the okay to only see the cardiologist once or twice a year. I hope and pray we get there.

Such good big brothers

For now I am grateful that I am home with Carolena. That she does not have to be on oxygen. That she does not have a feeding tube. That she can not only eat on her own but nurse. Is it frustrating, absolutely. But I get to be a parent to Carolena right now which is far, far more than most moms with heart babies. I feel blessed that my worst complaints right now are that she is impatient with nursing and that we cannot just get up and go somewhere (due to the isolation).

God is listening. I know this.


*pab said...

He is listening, and he is holding all of you close to Him. You are doing a very good job, baby sister, and remember this: it is only temporary. Carolena will grow stronger with each passing day, Kyle and Todd will get further and further past the flu with each passing day, and temporary interruptions to a "normal" life will only make you and your family stronger. xo

Keysgal@QuietWater said...

Amen to what Paige said. I could not say it any better. God is watching over all of you. He is listening to all the prayers on your behalf and they have given you strength....I have seen it. Love to you all.

karen said...

Carolena is here and stronger than anyone thought she would be - she (and your family!) are clearly blessed. Just take it day by day...

Laura said...

This trying time will be over soon and little Carolena will be stronger and healthier and all will be well...I just know it. God is listening and He is answering our pleas for Carolena with a resounding "yes". I love the photos of the boys and sister! Those boys look so proud to be her big brothers...they just beam love and pride for her. You are doing a great job and I commend you and Kevin for your efforts. Love you and wish we could be there to help out. ♥