Saturday, May 7, 2011

Delaney Update: 5/7

After a long night, complete with a little scare, we were able to spend the day resting and recovering from the emotions and fatigue of our long day of change yesterday. Poor little Delaney was just exhausted from all of the tests, travel, and all too familiar experience of the hospital. Again, home proves to be the best medicine.

Around 2:00am this morning Delaney's O2 level began to dip. Her breathing was a lot more labored than it had been in two weeks. We followed all the protocols, clearing her airways, keeping her on her side for fluid drainage. I made a slight adjustment to how her head was aligned and her O2 levels started coming back up. We turned up the oxygen just a tick to help her recover. Even still it had appeared that she was working harder for each breath. It concerned us enough that we contacted the on-call nurse to ensure that we were doing everything right. She assured us that we had, and made it clear that if we had any other trouble to feel free contact her. We stayed up and watched her a while and her vitals remained solid, and we all reached a bit easier.

Later in the morning we spent a lot of time with wet diapers, runny nose, and just a ton of fluids in her airway. It felt like we were suctioning her every ten minutes. I didn't think a baby could produce that much mucous! Between getting her feeds set up and meds, we received a phone call from our Home Care Nurse checking on Delaney. She is a very good listener and really was great to talk to. We really feel taken care of, and that the focus is Delaney first which gives us a lot of peace of mind. We discussed some next steps for Delaney's care and have a Pulmonary specialist through Beaumont, Royal Oak. We are relieved to have a specialist so close. We really don't want to have to travel to CH more often than we need to. Aside from the medical mumbo jumbo, we had a great day with 'little d'. The nurse recommended that we have a lot of "skin to skin" time with her. This really stimulates a lot of brain connections and we want to "wake up" as many of those connections as we can. So Lindsay and I took turns cuddling.

After a period of cuddling we both alternated playing with her, talking, and stimulating her in many different ways. Ever since George played "physical therapist" with her a couple of weeks ago we've been trying to keep it up. She has steadily and noticeably increased her voluntary movement. She has also begin to "anticipate" my next move - she's learning. There were time today that she actually started moving her arms and legs in much the same manner that I was pulling and tugging her gently in different directions. Something is happening.

Her eyes are still moving more, although not sure what she's focusing on, with the exception of faces (that seems to be there at least part of the time). I also could see that her pupils are much more responsive than they were in the hospital and even more so since last week. I can't wait till we see her track an object, I know that's coming. Probably the most exciting awareness I noticed was when I had her in my lap on the couch. I could tell that her nose was getting clogged up so I turned on the suction machine and reached over for the utensil. Much to my surprise before I even reached her nose, she turned bright red and brought her arms up to her face. While I hate to see my baby girl upset, this is the most noticeably we've seen her respond to audio. That suction machine is loud, obnoxious, and really irritating to me...and I'm not the one getting it shoved up my nose and down my throat, I would hope it would bother her. She sure let me know about it. I'll admit I caved and just wiped here nose with a cloth, I thought that might be more of a reinforcement.

We have a lot of irons in the fire and it's so important that we find the time to play with her and enjoy her, we are a family and she is still a joy! I joke about people being "Baby Drunk" around her, well I'm a baby addict! I freely admit it, she melts my heart and I would do anything for her. I have much more to say, but will perhaps include it on our next installment.

Love to you all,
B & L & d

1 comment:

  1. Aunt Kelli would do anything for my sweet & tenacious d too. There's something in her eyes makes the darkest day bright. Love you all.


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