McKinley Update

Together again for the first time....9-27-10

The day Brooks came home was a huge celebration, and also a stressful day for us.  The night before, we had been visiting McKinley and something wasn't right.  I've always questioned this "mothers intuition" you always hear about, but man, I experienced it big time that night.  As I'm sitting in McKinley's room listening to her 3 1/2 year old roommate scream at the top of her lungs (because she was throwing a tantrum, not because she was in pain from her broken leg) and watching CPS and the police come in and out of her room; I was having a mental breakdown.  My precious, peaceful, 4 pound baby girl deserved better than this!  She should be at home, with her parents and brother, not in this environment where she lies in her crib all day long until a nurse comes to bug her and take her vitals, or poke her for a blood draw.  But even more than that, I knew she wasn't ok.  I couldn't tell you why, but as I sat there on the couch sobbing with my head in my hands, I just knew something wasn't right.  And low and behold, at 6am that next morning the hospital called to tell us that McKinley had stopped breathing that night and had been transferred back to the NICU.  They determined that she had contracted a urinary tract infection and because she's a preemie, the first thing their tiny bodies think to do when something is attacking them is to stop breathing.  They immediately got her on a two week dose of IV antibiotics, and although this set her back a bit, she is now recovered from her UTI and feeling much better.
Since then, they have done a lot of tests on McKinley, most of them with very positive results.  They discovered that she has a vascular ring, which is a heart defect where blood vessels form a ring around the esophagus which can cause trouble swallowing.  McKinley is having some trouble drinking from a bottle so their suspicion was that the vascular ring could be causing that, but they found that the ring was very loose, and possibly even just a partial ring and shouldn't be causing any problems.  Next they did an esophagram to see if there was an opening between her esophagus and trachea that could be causing problems with swallowing but thank goodness, this came back negative as well.  So at this point we are just very slowly increasing her feeds through a bottle (she takes about 20cc's at a time right now) and thinking that her trouble with swallowing is just because she is a preemie, and that as she gets bigger this will come easier for her.
The Dr's have also been following her kidney very closely.  Since she got her UTI, her creatinine levels have remained steady at about 1.1.  She had gotten down to .9 before her UTI but hasn't been able to get back down there since.  This is still really high for a baby her size (should be closer to .3) but not high enough for them to send her home on dialysis.  They will continue to monitor her kidney every other week or so after she comes home and we're praying that her kidney will remain strong enough to get her past the 20lb mark so she can have a transplant, without needing to go on dialysis first.
Another concern right now for McKinley is her hematocrite level.  It has remained steady at about 19.5 which is very low.  Usually a level of under 20 requires a blood transfusion, so they are keeping a close eye on that and hoping to get it higher with some medications.
The great news is that McKinley was just transferred back to Evergreen after being at Children's Hospital for over a month.  She has just reached the 5lb mark and they are working on getting her to be able to eat on her own.  We are hopeful that she will be able to come home in the next few weeks.

She most likely will come home with her feeding tube in and on lots of medications as well as her colostomy bag, but hopefully it won't be long before she'll be eating and growing on her own.
In the mean time I am home most days with Brooks. Unfortunately he's been diagnosed with reflux which from what I am reading, is basically the same thing as Colic.  So, it makes days and nights with him very difficult as he doesn't sleep without being held, and when he's awake he's crying because his tummy hurts.  It's going to be exciting when they are both home!  Please pray for our family that the sleep deprivation doesn't drive us too crazy.  And please continue to pray for our beautiful McKinley that  as her body grows that it will heal and function for her in the best possible capacity.
Hope to update you again in the nearer future.... :)