Primary Children's Medical Center 8-24-11

Last night was a very rough night. The PICU team came in to tell me they were seeing the same thing in the 3rd x-ray as they saw in the second so they were going to assume it wasn't just poop and could be more serious. Then they dropped the horrible bomb on me...I was ordered not to feed her all night. They put her on IV for fluids and I spent the night getting up every few hours to pump and freeze my milk. Luckily Daddy was here, I couldn't hold her without her freaking out she was so hungry and she could smell me. Daddy took care of her all night long while I tried to sleep a little between pumping. She only had 1 episode of SVT, but she never ate or burped or was even bugged except that one time so we don't know if she didn't have SVT because her medications are finally working full swing or if it's because she was sleeping soundly and left alone most of the time.

The Cardiology team came in early this morning, a first early visit in a few days! They are impressed with Miss K's progress and they like what they're seeing, in the past 24 hours she's only had 8 or 9 SVT episodes :o). So they are starting on the oral version of Amiodarone, YAY! We are on to the weaning process! I can finally see a light at the end of the tunnel, though it may still be a little farther away than I want it to be. They also doubt there's anything wrong with her belly but they're letting the PICU pediatric team treat her as they wish, better safe than sorry.

The PICU pediatric team stopped by soon after the Cardiologists. They had taken 3 belly x-rays throughout the night and they said all of them looked the same except the last one, which looked more normal but not satisfying enough for them so they've ordered a strict no feeding diet all day today and maybe all night tonight :o(. I'm heartbroken, it's so hard to listen to her cry and hold her while she eats my shirt and cries :o(, it's such an easy fix to make her stop crying and be happy, not to mention it's one of the only things I can do to comfort her through all of this, and they've taken it away. So here's to a very long day of consoling an inconsolable baby and trying to pump somewhere in between to keep my milk supply going good and strong through all this.

8-24-11 A New Report:

Just got some bad news from a PICU pediatric team member...Miss K had 2 stool samples come back fine and the last belly x-ray came back perfect but her latest stool sample has blood in it again :o(. And they did blood tests and they came back positive for a high white blood cell count :o(. So now they know she's trying to fight some infection somewhere but they're not completely sure where, they're assuming it's her bowls. They have ordered that she not be fed the rest of today and all night then we'll go from there. They won't put her on antibiotics, they want to see it resolve itself if possible :o(. They've put her on Zantac to help with stomach acids from her empty tummy. It's so sad, she's beyond hunger now just rooting around trying to find food but she does it like she knows there isn't any, she's just being hopeful :o(. Luckily she's not really being too fussy much of the time, but I feel so bad for her :o(. We're just praying this bowl issue sorts itself out within the next 24 hours so she can eat again and get out of here!

She's only had 1 SVT episode so far today, it did last 1 hour though and my blowing in her face didn't stop it so we did the ice treatment, it worked like a charm and she came out of the SVT very quickly.

She had an infiltrated IV in her foot :o(, yesterday it looked angry and red but we thought it was a reaction to the tape, now the nurse and I both feel really bad :o(. Her poor little foot is all swollen and puffy and red and purple, it looks really awful :o(. The wound team said just to watch it though and it should clear up, but I'm worried because her other foot has the same issue only it didn't get that bad before we caught it and it's still looking the same :o(.

Miss K is quite the cutie though :o). She's changing like crazy. She already has quite the personality, so sweet and mellow :o). She is smiling now, I know it's quite early for this, we're all very surprised to see it but it's not just her making gas look good, lol! She has those smiles as well but it's so easy to tell the difference :o). She loves to smile at her Daddy mostly but I get a few good ones here and there :o). Luckily she LOVES her binky, this has been a huge lifesaver through everything. I never thought I'd say it was a good thing for a baby to like the binky until now.

I keep myself sane by writing all of this down for you guys to read and working on Heritage Makers projects, mostly Roo's year 2 book trying to get it done very soon, it helps me to work on his book because it makes me feel like I'm still trying to be a good mommy to him even though I can't be with him right now.

I want to thank all of you for all your thoughts and prayers again. I also want to thank everyone who's offered/given help in whatever way you've done, it's all greatly appreciated, I have no idea how I'll ever repay any of you. I've got some awesome friends and family in all of you :o).