Our Little Princess: Update

May 24

Today’s the day!!! I think we say that every time we provide an update on the blog. It might be because every day in Hannah’s life has been a big important day.  This morning they closed her sternum (chest bone)!  They were waiting to do this for two reasons:  they wanted to provide the chest enough room to swell and adjust to her surgery and make sure that she didn’t need to go back on the bypass machine (ECMO). Her swelling had gone down and her vitals were looking great, so they decided to close her up. Her skin had always been closed; they just had left the chest bone open under the skin.   Originally she was scheduled to go to the OR for this surgery, but Dr. Brown decided to do it at her bedside so they wouldn’t have to transport her to the OR. Transporting her to the OR would have required an army of people to move everything she had in her room. 

After they finished the surgery we were able to come back into her room.  It was interesting to see the cardiology team afterwards trying to stabilize her.  They would adjust her medications, ventilator, and nitric oxide trying to find the perfect balance.  This took about an hour, it was a little nerve racking for me to watch her numbers jump all over the place, but this is a standard procedure after the sternum closure.  They did the same thing after taking her off the ECMO machine; we just didn’t see them do it that time.

Hannah is one stubborn little girl.  Today as I am sitting, watching her, I see her foot twitch! This wouldn’t be a “problem”, expect she is supposed to be on some paralytic medication.  I turned to the nurse and asked “Did her foot just twitch?!”  We all anxiously watched to see if Hannah would do it again. Sure enough, she twitched again…and again.  I concernedly look at the nurse for an explanation, worried that my little Hannah was in pain and this was her way of telling us.  The nurse looked at Hannah’s pupils to see if they were dilated (an indicator of pain).  They were slightly dilated, so she gave Hannah a bit more pain meds.  The nurse explained that she didn’t think Hannah was in pain and that sometimes after being on the paralytic for a while the patient can start to get used to it and can “breakthrough” the medicine.  My little stubborn girl seemed to be doing just that. They weren’t too worried about it because they planned to take her off the medicine tomorrow.  The nurse said that the sedatives and pain medication she would be on would still keep her heavily sedated.  After they remove her from the paralytic she will start to wiggle around a bit, which would be a good thing; it will help improve the movement of fluid throughout her body.  As I sat and watched my little princess she began to wiggle her shoulders more and more.  I just chuckled because to me this said that little Hannah was sick of being asleep and wanted to wake up and play.

May 25

Today’s goal is to continue to wean her off some of her medications and her oxygen and nitric oxide.  The nitric oxide is one of the best medications for opening Hannah’s constricted lung vessels. They did some weaning throughout the night and Hannah is doing very well; her night nurse called her a “champ” when I called and talked to her. 

When we came in this morning the nurse announced that Hannah is no longer on the paralytic.  She will start to wiggle around more, but will still be heavily sedated.  The fact that Hannah is off the paralytic is immediately obvious; she is quite the wiggler.  The thing that threw me for a loop was when she started to flutter her eyes and try to open them!  I thought for sure I was seeing things, nope.  She will occasionally try to open her eyes, usually when she hears daddy’s voice.  It’s pretty funny to hear the nurse’s reaction when they see how much she is moving.  “I’m surprised she is moving so much, she is on so much pain medication.  If some adults were on this much pain medication they would be flat on the floor.  She is fighting through the medicine pretty hard, she must be sick of being asleep”. 

I think my favorite part is that Hannah wants her binky back so bad that she sucks on her ventilator tube.  You can hear her sucking all the way in the hallway sometimes (because she can’t get the best suck on the tube).  It is pretty cute to hear her.

They also took her chest dressing off today so we got our first look at how big her incision is.  She still has steri strips covering it, which will fall off over time. She has a pretty good battle scar it is probably 4’’ long.

Tonight we can back to the hospital to spend the evening with our baby girl.  When I went over to talk to her she fluttered her eyes and then stared right at me.  She was wide awake for 5 minutes or so looking at mommy and daddy. She didn’t seem very comfortable because she was grunting a little and had a little furrowed brow. A few minutes later we found or smelled the source of her consternation.  She fell right back to sleep after her diaper change. She is still doing very well, but there is still a long road ahead of us.

I was talking to one of the cardiologists earlier today about a time line. They always laugh when you ask them for a time line because they know they will always be wrong. We understand that baby Hannah is driving the bus and we will need to see how she responds to the treatments. He did say that it will probably be late next week before she comes off the ventilator.  That is the next big step, but until then we wait.

Talking with another one of her doctors, I was given some interesting information that I am so glad I did not have before she went in for her big surgery.  The Norwood Procedure (the surgery she just had on her heart) is the biggest surgery that can be performed on the heart and on a difficulty scale of 1-10 it ranks a 7 or 8.  We feel so blessed to have such an amazing team of doctors working with our little Hannah.