February 1, 2005:  The occupational therapist came to work with Theresa today.  She brought a foam roll pillow to help keep her head from turning back in the other direction.  I was teasing the nurse about it, because the nurse had designed essentially the same thing out of a washcloth and her stuffed bear, and I didn't have to pay a consult fee! :) 

 

The doctors decided to start feeding her milk through a feeding tube from her mouth to her stomach!  Only 4 cc (mL) every 3 hours, which is just a little bit over an ounce a day.  Not a lot, but since her stomach has never had food in it since she was born, it will be a start. 

 

They also decided to turn down the ventilator settings a little more to "test" her and see if she is showing any signs of being ready to be extubated any time soon.  This is real progress considering she just had her surgery a few days ago.

 

The Child Life worker came to see her today as well.  These are a group of people (one worker per child) who help them stay up to par in their development.  Since babies who spend a lot of time without external stimuli (being touched, played with, being drugged and not able to be a "normal" baby) are usually behind deveopmentally, they try to help keep them entertained and stimulated to help their neurological growth and well-being.  For a baby as young as Theresa, just interacting with her as much as possible helps, but they brought her a tape player and a classical music tape to play whenever I want to give her a new noise to listen to.  She really responded well to it.  In fact, her oxygen saturations were often 98-100 when the tape was on.  When it ended (if I didn't notice right away) they would drop to the lower to mid 90's! :)  Whatever works!!!

 

(update)  Later that evening, around the time the nurses change shift, I noticed that her oxygen saturations were dropping (not a lot, but for her they were getting low)  I told the nurses, and the day shift nurse checked her and they suctioned her.  Later, the sats still hadn't really risen, to I told the nurse (night shift) again.  She basically dismissed me and said that those numbers weren't bad.  I knew that, but they weren't great, or "usual" and Mommy-intuition told me something wasn't right.  I told her that her vent tube had slipped into her right lung before and that I may be paranoid, but I didn't want it to happen again, and asked when the next blood gas test would be.  She told me not until 6 a.m. and basically dismissed me again.  I went to check into my room for the night, and told myself that I would check back and if it still hadn't improved (after we let her settle down some from being suctioned) that I would persue it.  I returned and sure enough the resident and fellow on-call were there trying to see what was wrong because her sats had dropped so low very quickly.  They tried to just readjust her head, but they still dropped.  They ordered a blood gas and an x-ray, but then the sats got better, so they cancelled them (the fellow did, who didn't even know Theresa's history)  The resident (who did know) told him and the nurse about her previous 2 problems with her tube, but the fellow left anyway.  Then, after a minute, her sats began to plummet, and the resident reordered the x-ray.  Sure enough, the tube had slipped!  Not as much as the first time, and not into any one lung, but it was touching the "corona" (where the branches of the lungs split).  They pulled it back, and all was well.  It didn't cause a set-back or anything, but I was still mad that no one would listen to those who knew her history. 

 

February 2, 2005:  She did okay with her feedings yesterday - before they feed her the next dose, they pull out her stomach contents in a syringe.  If it is less than half of the original feeding, they can feed her, if it is more, then they have to call the doctor.  Usually, the recommend giving her back what they pulled out and then skipping the next feeding.  This happened a couple of times, but considering her stomach is new to digestion and pushing the food through to the intestines, I think she has done well.  The doctors are going to keep her feeding amount the same for another day and see how she does.

 

They also turned down her ventilator settings a little more, and are beginning to turn down her morphine dosage to wean her from the narcotic.  This will allow her to be more awake, breathe better on her own, and see how she reacts to having less pain medication.

 

After what happened last night, I opted not to hold her because I didn't want her vent tube to slip again.  I did let her surgeon and doctors know about the situation, and they checked it on x-ray, and pulled it up a little more to a more perfect position, so hopefully it won't happen again.  It most likely happens when she moves or someone moves her to weigh her, etc.  It's nobody's fault that it happened, but I just wanted them to be aware so they can fix it earlier if possible.

 

February 3, 2005:  Since Theresa has been doing much better digesting her feedings, and has pooped since she began eating (I know I seem obsessed with pooping, but its an indicator that her bowels are working properly and not kinked up or inflamed since her surgery and being in her chest for so long) they have decided to increase her feed amount to 9 cc per feeding!!!! 

 

Her arterial line (in her left arm) has become non-functional (it happens) and since they can't use it to draw blood for blood gasses, they are just going to remove it, since it becomes a possible site for infection.  Since Theresa has been trying to suck her left thumb all this time (like Nathaniel) I think she will be happier.  They aren't going to put a new one in, they'll just use her central line for now.

 

One "set-back" is that she hasn't been doing as well as hoped on weaning to the lower settings on the ventilator.  So, they are going to put her on a new ventilator which will give her "pressure support."  Basically, when she decides to take a breath (which she is doing fairly well) it will push in some air with a little pressure and make her take a deeper breath.  This is supposed to help train her lungs to breathe deeper, thus expelling more Carbon Dioxide.  It will also help her new diaphragm learn to work properly.  The bad thing is that this adds a week to ten days on this ventilator, which is more time before she can be extubated, which is more time in the hospital.  Not a lot of time in the long run, but I was hoping for more.  Overall, we are still moving in the right direction, but more along the lines of "baby steps" again, instead of leaps and bounds.  To be expected, but disappointing nonetheless.

 

On a positive note, Theresa gave me a wonderful birthday present - she smiled for me!  I don't know if it is the weaning of the morphine, or what, but she opened her eyes so wide and looked around.  I began talking to her, and she seemed to really like it.  So, I started playing with her (touching her chin, nose, etc, like I did when Nathaniel was a little baby) and she began to open her mouth, stick out her tongue, etc.  She looked really happy and not agitated.  She usually cries when she sees anyone (even me) so this was something really special!