Wednesday - 10/19/05
On Wednesday Kaitlyn switched from the oscillating ventilator to the regular ventilator and I got to changer her diaper for the very first time, with a lot of help from her wonderful Nurse Rosa…..with all the wires it was a little bit tricky to not get the wires caught in her diaper and you have to be especially careful to not let her skin get stuck to the tape because her skin is so sensitive. Lifting her little tiny legs to lift her butt off the diaper (which she didn’t like much)….was amazing, she hardly weighed anything at all. All the nurses tell us that she squirms like crazy when she has a wet diaper. Her fussiness definitely shows that she likes to be clean (she gets that from mom!).
Today was also the first day she got some of my breastmilk! Not very much 1cc….which is basically about 10 drops. It’s too soon to tell how she will tolerate it, as her stomach and digestive system just isn’t ready to digest food yet. But she also had two poops today with meconium, the docs say the milk isn’t going through her much yet, but when they pulled the milk back out of her stomach (very weird to see) they did see some digestive enzymes in with the milk, so they put it back in her stomach before giving her another 1cc of milk. I finally felt like I was doing something to help her, all the countless times I’ve pumped and now she is finally getting something from me.
Thursday - 10/20/05
Today Kaitlyn continues to do really well. Her oxygen levels have been down as low as 28%. She got more milk today and is getting it now about every 3 hours. The doc says that she still really isn’t digesting the milk, it’s basically helping condition her to really start digesting it and get her system working.
If she continues to do well, tomorrow they may try to switch her to the CPAP (Continuous Positive Airway Pressure – it helps her breathe by helping keep her lungs inflated so she doesn’t have to work as hard) instead of the ventilator, which means that she will get to have her breathing tube removed! That will make mom and dad very happy.
Liz "cupping" Kaitlyn to calm her
Friday - 10/21/05
Today Kaitlyn got her breathing tube removed and went on the CPAP. When we got to the hospital her entire head was bandaged up, as it held the face mask up to her head. They did a breathing treatment while we were there to help open up her lungs. She had been on the CPAP since 9am in the morning and was tolerating it well, however her CO2 levels were up a bit. The doc said she really liked having the breathing tube out and that they were slowly trying to wean her from the morophine. They also give her caffeine to help stimulate her to breathe.
They removed the face mask and we got to see Kaitlyn for the very first time without any wires or tape on her face! Unfortunately, her face was very “scrunched” up do to the mask that was on it, so she wasn’t looking her best, but she opened up her eyes (of course when she was squirming as once again she doesn’t like being handled what so ever.) But she was so beautiful! Brian actually got to hold her for half a minute or so. Her whole body fit within his hand, but he used his second hand to hold her head. It brought tears to both our eyes. Our daughter. Being held by her papa.
Dad was taking pictures like a true papa! And I always used to be the camera woman! I was too in awe of seeing her for the first time.
By the time we got home from the hospital, the doctor called us and said she had to removed her from the CPAP, as she was having a lot of A’s (Apneas-not breathing) and B’s (Bradycardia – heart rate below 100) and they had to re-intubate her and put her back on the ventilator. We had been warned that this was likely. The doc said she was really pleased at how long she was on the CPAP however and she was doing really well, her oxygen levels were still low, around 30-40%.
Tonight when I got home I had a crying break-down. Seems to be a common occurrence for me. I tried to ask Brian how I should feel, as it’s so hard for me to feel “encouraged, joyful, optimism or any type of happiness” when Kaitlyn is doing better. I feel too guilty for feeling this way because of the incredible grief I feel for Corinne. It feels like I’m being disloyal to myself and to Corinne’s memory.
Brian asked me how Corinne would want us to feel. He felt that she would be happy to know that her sister was improving. He’s right, but why is this so hard? Why am I so afraid to feel a sense of hope? I really, really feel like I’m being disloyal to my other daughter that is no longer here.
Well, it’s time to pump again and for Brian to change my dressings. It’s like having a full-time job (which I do have but I’m just not going to)…..Between pumping, dressing changes, trying to sleep to recover, time at the hospital, driving to and from the hospital, the entire day flies by. I’m completely exhausted every evening when I get home. We’ve been surviving on take-out food – at least I’m getting a bit of an appetite back.