Updates on Nolan

so, after a relatively long while of stability and relative calmness, Nolan managed to extubate himself this morning.  This was at the beginning of a morning kangaroo session with kara which ended up scaring his parents half to death and initiating a “code” response from about 15 hospital staff.  i repeat, scaring us three-quarters to death.  fortunately, due to such a rapid response and epinephrine, nolan is again wide-eyed and squirmy with energy and life to go around.  he’ll be off feeds for a couple of hours, but all in all everything should be back to about the same in a few hours.  he’s got a total of two extubations under his elastic diaper straps now.  whew, again i say whew. we figure nolan is not letting us take one iota of his being for granted and we’re trying not to slack off into too comfortable a lull if we can help it. 

It has been slow going getting more pictures uploaded but I will try to get one or two up every day since we’re in a slow news period. Here are some pictures from last Friday of Ronan and Nolan kangarooing.

Pretty sweet, huh?

I love Nolan’s tiny little hands.

Stay tuned for more of the same… one of them is kangarooing every day now! I do have a few slightly different pictures up my sleeve, though…

-Maria

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duuuh-duuuh-duuuh

da-duuuh

bom-bom-bom-bom

…and so on Nolan’s 2 month birthday he weighs in at 1001 grams, thats 2# 3 oz!, almost double his birth weight and hopefully well on his way to pounds and wonderful pounds of fat and muscle.  he has a new friend, his zakee, a big microfill fleece hand that snuggles around him (pix on the way) and he, nolan, is almost a clean straight bean with only 1 mic/kilo/hour of fetenyl (sedative) on his drip as opposed to the 7 mic/kilo/hour after his pda surgery.  he is back on full fortified feeds of karas mothers milk and is on low oxygen requirements from the drager ventilator.  kara and i are feeling good and nolan seems to be feeling the same because he smiles alot, or it just could be gas. 

he still has a million miles of hurdles:  the docs have tried ventilator changes in attempts to ween him, but basically he’s back to the same settings he’s been on for a while; he is on continuous feeds to help nutrient absorption because his ostomy output (#2, poopy) increased slightly which could result from the increased calorie fortification of kara’s milk or poor absorption from his healing bowels; he is receiving sodium and potassium supplements because his electrolytes have been lower possibly because of the increased ostomy output and lasics (diaretics).

all in all, nolan continues to slowly gain ground in this world, and we will take and cherish every inch he procures for himself and his tiny fist shaking in the air.  thanks to everyone for keeping up and keep sending growing thoughts nolan’s way.  pray that he grows like a little butterbean stalk which seems to be the path to Nolan’s joining his family at home on windsor circle.

Nolan has been very stable over the last few days. Kara or Ronan has gotten to kangaroo every night for the last four days, and it looks like the trend will continue! Nolan’s platelet count is at a whopping 329,000 and waste output continues to be excellent so they are increasing his milk intake a bit faster now. In fact, the other day, he had a diaper with 75cc of urine in it… If I’ve done my conversions correctly, that’s about 8% of his body weight! Needless to say, he lost a bit of weight with that one, but now they really think he’s lost all the excess fluid. Really.

Here’s a picture of Kara and Ronan and Nolan from Wednesday. A rare kind of picture, since it not only requires one of them to be kangarooing, but it also requires three people to be at Nolan’s bed, and that is Not Allowed though we obviously try to bend the rules sometimes. Treasure this particular picture. Exciting news on the picture front, though: my friend Satsuki has kindly lent me her camera for a few days, so I will be able to get some better pictures of Nolan, and hopefully even a passable video. In fact, I got some great pictures last night but haven’t had a chance to upload them yet. Keep an eye on the photo albums. There are already a few new pics from Wednesday of Ronan kangarooing.

…and on his first halloween ever, nolan received a halloween quilt and pumpkin took (boggan for the mountain folk) from the nicu nurses and volunteer quilters, and most importantly of all, kara and nolan did kangaroo care for the first time in ages.  we were all very happy and content and felt just like marsupials in wait of the great pumpkin.  happy all saints day everyone.