Just us girls today. Daddy had to go back to work. We are still at Dell Children's and hoping to be discharged today.
I feel like we will be bringing home a new baby. A really happy baby. Before coming here, Neely was pretty fussy, up all night, and vomited if her g-tube was left clamped. Today, Neely is a big cheeseball. She smiles all the time and I swear she has even laughed a couple of times. She sleeps well and hasn't vomited in a couple of days. She seems to be hungry and takes her oral meds and bottles happily. Things seem to be moving in the right direction. And yes, I know that we will be back here at Dell again, maybe even soon, but for now we are just going to sit here and smile at each other.
This place is so different from the NICU. We were so familiar with the NICU - the front desk, the nurses, the case manager, the doctors. Here, it seems like there is a new face everyday and we need to explain things all over again. We don't feel comfortable leaving because we don't know who is going to show up and order something crazy. The other night, someone said to go ahead and start feeding her again. Something like "no more than one ounce every hour". This kid has never had more than 5 cc's every 3 hours. An ounce would be bananas! We kind of just smiled and nodded and later laughed about how the NICU doctors would probably flip out if they heard that.
Be her advocate. Caty, Dr. Tao, and Dr. Cho (NICU) told us lots of times that we will become the experts on Neely and we will have to be vigilant and advocate for her in the different places she ends up. This has become very obvious here. We've had to explain her difficult anatomy (post-surgery) several times. We've had to explain why oral meds won't work on her. We've had to keep the "one kidney" issue in the forefront when discussing treatment regimens. I'm sure there have been doctors or nurses who've walked in thinking we just sit here, clicking through TV channels. Pretty sure they walk out feeling pretty confident that this little girl's parents are all in. We are her walking, talking medical chart. We can't change her Broviac dressing (yet), but we can change an ostomy bag with some MacGyver style creativity. I'm proud of us. As my friend Judy reminded me yesterday, God gave us this little girl because we can handle it. We've dealt with some of the worst news and come back with more faith, more strength, and more conviction. Don't get me wrong - I've spent some time crouched and crying in the shower, or having a texting pity-party with my friend Lindsay, or (worse) emotionally smacking my poor husband around. But the tears dry, and Lindsay and I put our big-girl pants back on, and Josh (emotionally) smacks me back to reality. We are here. Covered in poop and bile and blood and stomach juice, but we are here. And we are smiling.
I feel like we will be bringing home a new baby. A really happy baby. Before coming here, Neely was pretty fussy, up all night, and vomited if her g-tube was left clamped. Today, Neely is a big cheeseball. She smiles all the time and I swear she has even laughed a couple of times. She sleeps well and hasn't vomited in a couple of days. She seems to be hungry and takes her oral meds and bottles happily. Things seem to be moving in the right direction. And yes, I know that we will be back here at Dell again, maybe even soon, but for now we are just going to sit here and smile at each other.
This place is so different from the NICU. We were so familiar with the NICU - the front desk, the nurses, the case manager, the doctors. Here, it seems like there is a new face everyday and we need to explain things all over again. We don't feel comfortable leaving because we don't know who is going to show up and order something crazy. The other night, someone said to go ahead and start feeding her again. Something like "no more than one ounce every hour". This kid has never had more than 5 cc's every 3 hours. An ounce would be bananas! We kind of just smiled and nodded and later laughed about how the NICU doctors would probably flip out if they heard that.
Be her advocate. Caty, Dr. Tao, and Dr. Cho (NICU) told us lots of times that we will become the experts on Neely and we will have to be vigilant and advocate for her in the different places she ends up. This has become very obvious here. We've had to explain her difficult anatomy (post-surgery) several times. We've had to explain why oral meds won't work on her. We've had to keep the "one kidney" issue in the forefront when discussing treatment regimens. I'm sure there have been doctors or nurses who've walked in thinking we just sit here, clicking through TV channels. Pretty sure they walk out feeling pretty confident that this little girl's parents are all in. We are her walking, talking medical chart. We can't change her Broviac dressing (yet), but we can change an ostomy bag with some MacGyver style creativity. I'm proud of us. As my friend Judy reminded me yesterday, God gave us this little girl because we can handle it. We've dealt with some of the worst news and come back with more faith, more strength, and more conviction. Don't get me wrong - I've spent some time crouched and crying in the shower, or having a texting pity-party with my friend Lindsay, or (worse) emotionally smacking my poor husband around. But the tears dry, and Lindsay and I put our big-girl pants back on, and Josh (emotionally) smacks me back to reality. We are here. Covered in poop and bile and blood and stomach juice, but we are here. And we are smiling.
P.S. Special thanks to 1) our pastors for visiting us this weekend 2) Philips (Josh's employer) for throwing a super cool Kickball Tournament to raise $ for Neely and 3) the lovely Judy for stopping by to give me a break and take me to IKEA! Got some cute stuff for Neely's room :)
Kat, Josh & Jack...you are all being such a great support system for each other, Laney and, above all, Neely. She is earning her name and showing you why it fits her so well...she is a champion. Love you guys!
ReplyDelete