Thursday, March 31, 2011

NICU: day 22

today's update thanks to jay:

"today was another steady good day. got to admit, i enjoy going during my lunch break to visit baby jemma because it's also when the doctors make their rounds and i get to ask lots of questions. with each day, i feel more comfortable in knowing that she will be just fine. they reported that we will not find out about the factor 13 lab test that hematology sent out until next week. dr. coghill says that the results will not change how they are going to continue to treat her.

also, the blood she had under her scalp has shrunk. her pocket for her spinal fluid looks good and her shunt is operating correctly per neuro. they spoke about developmental issues that may occur because of the bleed she had while on ECMO and dr. coghill said it would be highly unlikely that she'd have any issues learning to eat. she's just 2 weeks post ECMO and it normally takes about 30 days to get everything learned correctly with suck, swallow, and breathe. this was in response to her spitting up some of her oral and NG feeds. the occupational therapist is going to continue to bottle feed twice a day. today jemma took 36cc but coughed up 11cc. she's getting a total of 55cc now and her weight is at 7.35lbs.

additionally, dr. coghill spoke about how the shunt stops working. basically, the "pocket" they create continues to get smaller and smaller until it's unable to remove any more fluid, thus clogging the shunt. i asked how long after the shunt "stops working" will they take to decide on if a permanent shunt is necessary. he said that it depends on the size of the ventricles from a CT and if her head circumferences are stable. there is a chance that the clot caused from the bleeding during ECMO can excavate itself naturally and relieve the pressure, thus might not needing a permanent shunt. we are hoping for this to happen, but will not get our hopes up just in case it doesn't.

lastly, i asked dr. coghill if they would consider an MRI to get a more detailed picture of the vegetation on her heart. he thought that was a good idea and would bring it up to cardiology next week when they meet to determine to keep her on antibiotics. his concern is that it might be difficult to get a good picture of the moving mitrovalve. all in all, it was another good day. sweet baby jemma is continuing to progress for the good."
meanwhile on the home front today, stacy came over to pick up the girls and take them to the mcwane center while i cleaned like a mad woman. it's amazing how much easier it is to organize, clean, and do laundry when my wee little tornadoes aren't there to undo everything i just fixed. thank you so much, stacy! that helped me out big time.

furthermore, my doorbell rang twice today which meant my front door was greeted with special surprise utmost favorite! one was a gift basket filled with assorted cookies and a super cute storybook that i have already read to the girls twice. this very thoughtful gift was given by my cousins in california (the merlos). the other surprise was a beautiful bouquet of rainbow tulips...simply gorgeous and definitely brighten my day. these were given by my cousin, joy-joy, who lives in florida. again, very thoughtful and nice. also, big B colored sweet baby jemma a very pretty card that i have kept along with other cards that she has received. all of these sweet surprises mean so much. thank you, guys...we love ya'll immensely!! XOXOlastly, the day is winding down and jay gets home from work. our friends christi and stacy along with their kids come over to our house to watch the girls for us while jay and i drove up to the hospital together to see our sweet girl. when we first walked up to the NICU, we noticed that visitation was closed. one of the ladies whispered to jay that a baby had just died. we were all devastated. it made my heart hurt and made me want to hold sweet jemma that much tighter tonight. so we waited for about 2 and a half hours...there was no way we were going back home after hearing such a tragedy. they opened up the doors, and we practically went running. we fed her, changed her poopie diaper, and then held her all night. she was so awake and active tonight that it made us very happy.

jay took a close-up picture of all of us and then told jemma to "get use to it because it's all mommy wants to do." obviously the man knows me well. very well indeed. we rock you until you fall asleep and then lay you back in your crib for a good night's rest. you looked like such a sweet angel. then jay and i headed back home where christi had dinner cooked and ready for us...did i mention that we have the most bestest best friends in the whole wide world!? seriously, i have no idea how we would manage without all the help we have been receiving. thanks a million!!


*Yankee Belle* said...

Sorry all your booze is gone. =P Looking at this picture....Jabbin' Jemma is totally all Jay!!! I cant wait to visit her again. xoxoxo

Suzanne said...

She looks great Kim! Continuing to pray for her everyday. So happy everything has been getting better for her lately!

Jamie said...

Jemma definitely looks just LIKE her daddy!!! Glad to hear all good reports!!!

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