Saturday, July 21, 2012


Friday morning they told me that Cecilia is going to be extubated in the afternoon.  I felt so nervous and terrified.  If it goes wrong again, I might just fall over and have a heart attack.  I feel like I am walking on an unstable bridge that if I walk too fast, or too slow, too light, or to heavy, I will fall through the cracks.  The last time they extubated Cecilia was the happiest and saddest day of my life.  I am scared to be hopeful, for good news to be taken away so fast again.

Karen and her mom came to visit us at the PICU after her appointments on the 6th floor.  Karen is a friend I have made that is pregnant with a daughter who also has Hypoplastic Left Heart Syndrome.  It was so nice to see them! 

OT came to put Cecilia in her chair.  The nurse said she has been aggravated all morning, and that it might be better to come and try after extubation.  OT went on to say that there have been studies to show that putting infants in these chairs prior to extubation actually helps their lungs.  I stopped her right there and said I want Cecilia to go in the chair, especially if it could help her respiratory status.  So she went to the NP for permission, and she gave the OK :)  I signed a consent for OT to take pictures of Cecilia and use them to teach.  Oh yeah, we are divas and love our picture to be taken, and even better if it will help her teach students.

She sat up in this chair for hours.  I think she really liked it!  Must have been interesting for her to get to see her room from another view.  More chair time please ♥

I was able to get Emily to come babysit the girls.  I don't think I can handle a re-intubation alone, and this is a day I really needed to be with Karl.  I went up to the 8th floor where my mom just started her new job in a different department, and cried it out during her lunch break.  My daughter's withdraws is really getting to me.  As if she isn't going through enough, and we waited sooo long to bond, and the only thing that makes her happy is a PRN...  It sucks!  I wish I could comfort her and help her through it.  That's the worst part.  She is inconsolable.  Actually it seems to make her worse when I touch her.   After visiting my mom I went out to the garage to wait for Karl.  When we came back up Cecilia was on a nasal cannula.  I stared at her monitors, at her chest to see her heart rhythm.  She was so much more stable this time.  I want to celebrate, but I can't.  I can't explain the fear of this happy moment being taken away again.  I took a lot of pictures.  I paced around, sat and stood, paced some more...just waiting.  I didn't even want to share the good news, just to have to again say a couple hours later, "Nevermind Guys"......After an hour things were still looking good.  I finally could share her face vent free.  Karl left after a couple hours so he could relieve Emily.  By 9 o'clock, they were about to do an X-ray.  Cecilia's right lung is partially collapsed, and they had been doing some light pounding on it every few hours to help inflate it.  I cry when I'm alone and thank God.  I still can't jump up and down and celebrate.  I cry in bed and I can't sleep.  Karl comforts me and he echoes what all of the moms have told me so far "If we focus on all of the negatives we will be depressed all of the time.  We have to celebrate every big and small step because they are few and far between."   Even if I am scared to.   

When I first got home I spent time giving individual attention to the girls...cuddling, talking, sharing the good news about Cecilia.  Their faces light up when I say she is getting better and can come home to live with us soon.  Sophia holds on to my leg, and begs me "Please don't go to work"...she thinks when I visit Cecilia I am going to work.  I try to tell her I am with her baby sister, but she doesn't understand.  She needs to meet her sister♥  Anastasia is handling this all the best.  We cuddle and I reassure her I have missed her all day, give her love, and she is happy.  Julia fights a little more with her sisters than usual, at least when I am around.  Gina cried last night, she wanted to sleep with me in my bed.  She is going on 7.  I was very close to giving in and letting her sleep with me, but she seemed to calm down after I tucked her in and laid with her in her bed, playing with her hair.  She came up to me after breakfast this morning, and apologized.  "I'm sorry I acted like that way last night".  I told her it is ok to cry, and I want her to always feel comfortable to express her feelings with me.  I made her promise me that she will always express her feelings to me.  She smiled and said ok. 

Karl has been with Cecilia today. We used to split the day in half, one of us in the morning, one of us at night.  In the past week it has been more of one of us there in the day, and the next day the other parent.  Mostly because it is a lot of gas driving back and forth there multiple times a day.  She is in a baby crib now, and they said we can bring a mobile and put it on the crib.  I am really excited to do that ♥.  I'll have to go buy one.  She is on room air (no oxygen), but has a new contraption that forces air in to help her lung.  I'm not sure what it is called, but the BEST news is that Cecilia is sucking on her pacifier today like a pro!  Our next big obstacle is oral feeds.  Sometimes it takes heart babies little as days to get the hang of it, sometimes it can take years.  Sometimes the oral part(sucking and swallowing) is never the problem.  Sometimes they tire out just on the task of eating, and burning too many calories.  The only thing we can do is hope for the best and deal with whatever issues she will have (IF ANY) the best we can.  I'm just really thankful to make it to this part

She gets aggravated so easily, and when she is mad she de-sats and her respiratory rate gets crazy fast.  So it wasn't really in Cecilia's best interest to be held last night.  She was narcotic withdrawing a lot and her body is still getting used to breathing without the ventilator.  Actually me touching her just seemed to make her a lot worse last night!  The RT  at one point asked me what kinds of things does Cecilia like me to do for comfort?  Just curious out of desperation to calm her...  I was about to break down.  Because the sad truth is I DONT KNOW!  Cecilia's like the little lonely lost bird wandering around not knowing who her Mother is.  We never bonded and I'm a stranger to her.  I felt so horrible and guilty that I couldn't give her an answer.  How unfair is it to my sweet baby that she is about to turn a month old and has never been comforted.  :( 

Karl might be able to hold her today.  I am really excited for him if he can.  Here is some pictures of Cecilia vent free!  I did this when she was asleep intentionally because she is so easy to make upset when awake. 

Daddy has some cool pictures of her today he texted me from his phone.  I'm going to try to figure out how to send them to the blog from my text.

Once again, THANK YOU to all of our friends and family for prayers and encouragement, and for cheering her on!

P.S., Daddy DID get to hold you Cecilia, he just told me the good news :)  22 days to make it to your Daddys arms, aka the safest place on earth, our beautiful princess. ♥