Sunday, March 22, 2009

So close to going home....













Sorry to all who have been reading that I haven't written since after the surgery, pretty much anytime she's awake I'm holding her, or when she sleeps I sleep! It's kind of like having a newborn all over again! She is doing so well, she was able to have "clears" yesterday, so she got to have Jell-O and some juice, it's funny she's never had jell-o, and she loved it! She had this cute little pink mustache, since the spoon was a little too big for her mouth. They took the drain, or stint out of her tummy yesterday, I didn't get any pictures of it, since they (the surgeons) always come around pretty early and I never think of taking photos. So her - wound? slice? future scar? I'm not sure what to call it, but where they cut her open and where her stoma used to be is healing up really nicely. She has two places with stitches and they are different types. They are both internal though, so we can't see them. Her stomach has about a 2 1/2 inch cut, and it looks like the skin is pinched together on the outside, so it's just a long line that goes from the left side of her tummy to just a little past her bellbutton. The stitches for that will disolve in about 4-6 weeks. Directly under that is a little criss-cross cut, that was where the drain came out, they just took it out and it's been closing on it's own. Then, the stitches at her rectum are just inside, they basically took her intestine where it had been attached to her tummy, then pulled it down to her bum then stitched it in place. Those stitches are "permanent" they won't dissolve, but they will eventually work their way out (months? years?) and the scar in place will keep her attached. When we change her diaper you can see one little stitch sticking out, that's the only way you know what happened! She is completely off the IV meds, and going on Tylenol during the day, and Tylenol with codeine at night. She was able to eat solids, they said she can go back on her regular diet, but supplement with fiber so that her stools are soft, cause the last thing we want is strain and a potential ripped stitch *ouch*! They say that maybe we can go home today, but she needs to poop first after eating all those solids, so potentially not until tomorrow. We just want her to be 100% ok before we go off and try to do this on our own! So here are some more photos, you can always go to Kevin's facebook account to see more pictures.

Friday, March 20, 2009

Day after.....

Surgery was a success! We went back to see her (she didn't get out until about 5pm) and she had her eyes about half open, but when I held her hand she just squeezed and wouldn't let go for anything! When I would try to pull away she just held on tighter, it was so cute. She had a pretty good night, and actually slept for quite a long time, so I got to sleep for a long time! Here are the wires in her - 1)heart moniter attached to her toe 2)catheter, umm you know where! 3)she has two IV's, one in each foot, but only one is being constantly used. I think they are using the other one for her medicines 4)an epidural from her back and 5)an NG tube, for sucking up her stomach contents, that reduces inflammation and the risk of infection. Oh, I forgot, since this one isn't hanging out, she has a drain from her stomach where they stitched her colostomy closed. She still can't have anything to eat, since it will just get sucked back up through the NG tube, but she has a lot of fluids going on, and doesn't seem hungry. I gave her a couple small ice chips this morning (I LOVE hospital ice, Tiff and I call it pre-chewed ice, because it's so crunchy and yummy!)not for her to drink, but so that she could wet her mouth and throat since it was so dry and her coughs sounded so scratchy. she seemed a lot better after that. She is very attached to me, it makes it hard to leave and go back to the RMac house to take a shower and eat, since she cries when I'm not there. Kevin is holding her right now and she's sleeping, I think if she had it her way she would just have us hold her all day and night. Oh, and she pooped!! It really hurt her, I felt so bad, but it wasn't an actual food poop, just what was left in her bowels going the restof the way through. She's been tootin all morning though, and it's really so bizarre to hear it from her! Kevin and I just look at eachother and go, "was that you?" because we forgot already! I have pictures of her after the surgery and just hanging out now, but i forgot the cord at the RMac house, so I will post them later tonight.

Thursday, March 19, 2009

Lexi at Doernbecher...Day of the Surgery

Warning: This rambles quite a bit, sorry :)

So we are here in Portland, Lexi is actually in surgery right now and I am listening to a little kid screaming his head off down the hall. We came up Tuesday night, her appointment was Wednesday and they admitted her at about 4:30 pm. They started her on a clear liquid diet, and that went on until about midnight, then they had her just with an IV and nothing per mouth. They also had begun her bowel prep, which was this medicine that they had going through her nose/stomach tube, that was called "go lightly"..... Baloney! That stuff had her filling her bag completely every hour! But as the night (and endless hours of no sleep) went on her stool became more and more clear, and turned yellow, which is just mainly stomach bile. She wasn't scheduled for surgery until 3:30,so when Kevin came back(he stayed at the RMac house overnight, and we stayed up with Lexi) Tiff (she came up last night) and I decided to go back to the Ronald McDonald house (the most awesome place, especially when you are away from home and your baby is sick, or having surgery) and do some laundry (considering that she had thrown up all down my shirt when they put the nose tube in, and then I had poop on my sweats and on my shirt, and two of her blankets) We had some breakfast, and had just gone to the room to take a nap - since the longest chunk of time we slept was 2 hours straight - when Kevin called and said they moved her surgery up, they are sending a transport team to take her down. In hospital time that could mean 5 minutes, or up to an hour, you never really know. We booked it back to the room, no shower, still only 5 hours of sleep- really crappy sleep honestly since I was on that hard chair that folds into a bed, Tiff was on the window bed, and I had to hold Lexi all night, she screamed every time I put her down, and if I left the room like, to go to the bathroom it took a bit to calm her down when I got back! Anyway, all of that to wait about 1/2 an hour, then go down the operating "base" and wait there about another 1 1/2 hours! So they are still in surgery, and this has been since about 12:30, they said they will come out and update us about 1 1/2 hours into it, but still no news yet and it's been 2 hours. They are going to sew up her colostomy, take her intestine down to her bum, literally pull it through and stitch it directly to her rectum. She will have stitches in 2 places, so she will be very sore for a while, and on some drugs to keep her happy. She most likely won't get to eat for at least 1 full day, and then after that on a special diet for a couple weeks to let her stitches heal up so that nothing tears. We will probably not be released to go home until Tuesday, maybe later depending on how she is doing with everything. So here are some pictures, and her are some videos we've taken- she has actually been so happy and smiling for everyone and she loves the nurses (when they aren't shoving tubes down her nose or sticking needles in her legs!) because they have stethoscopes and pager/phones around their necks! She looks pretty sleep deprived in some of these though, and a little stoned since she is giving this cheeseball grin all the time. Soon though she will be back to her normal self, being our happy little peanut!








Monday, March 9, 2009

Rough night


(Lexi and Daddy last night when it randomly snowed!)

(I hadn't showered yet, but she actually smiled with me!)

( I love her little tennies, they are from Auntie Beth)
Poor Lexi....She has gained the weight she needed to, so we scheduled her surgery for this Thursday (we scheduled it a few weeks ago)and everything has been a go. We are leaving for Portland tomorrow, she has pre-op on Wednesday where they will admit her into the Doernbecher Pediatrics, and then surgery Thursday morning. So we've been living in fear of her getting sick, since she has to be in prime health for this to happen, and everything has been fine. Kevin had a really bad cold last week, so we kept them away from eachother as best as we could. I'm not a germaphobe by any means, normally I think it's great for her to be around some germies, so that she builds a strong immune system - don't get me wrong, I'm not gonna hand her to someone visibly icky, or someone with chicken pox!I just don't freak out about her getting dirty, or if someone doesn't wash their hands before they hold her, ya know, stuff they say all new moms do - Well I don't! Anyway, she wakes up yesterday with a cough, I'm thinking, "this isn't horrible" Then when I get home from church, Kevin is changing her bag and says "I don't know if she has diarrhea or what, but this thing exploded!" And lo and behold - she has diarrhea. Now, having experienced this, many moms will say "no big deal, she poops in a bag how bad can it be?" Let me tell you - BAD...REALLY REALLY REALLY BAD. See, she goes in a bag, but this stuff is so acidic, it just eats right through the seal, and literally rips her tummy up until it has open sores and is bright red like a burn, which means new bags won't stick because I can't clean it without causing her a lot of pain - that happened last time in the course of about 1 1/2 days. Oh, and did I mention that we planned her bags down to the wire - she had 6 left? HAD mind you, HAD - she has 3 now. They send me 30 bags a month, and then I have to wait a month to reorder, she had diarrhea 3 weeks ago, so I can't reorder without a prescription. Oh, and last time, she had weighed 17lbs 10oz, so we scheduled the surgery, then she got sick for 3 days, and lost a pound because of it. So she can't have this for very long, because if she doesn't weigh enough they won't do the surgery. So I'm stressing out quite a bit about this, but we had Kevin and Mike DeKorte give her a blessing last night, which said she would have her surgery as planned. I have faith that she will be ok. I had to wake up every 2-3 hours last night to empty her bag in the sink, which would wake her up, then give her pedialyte and rock her back to sleep. Otherwise, her bag would have leaked everywhere, which is a lot worse! So she is still sleeping right now, I was getting ready for work and it was like a voice said "what the heck are you doing? You need to stay with her today." So here I sit, venting and complaining and waiting for her to wake up so she can have rice and applesauce. You know what's funny though - I honestly love being a mommy. If someone had told me all of this before hand, I would have said no way! There's nothing else I want to be now. Oh, there she's waking up now, I'll blog when we get to Portland as well as post photos.