Saturday, August 15, 2015

August 15th Night 2 and 3

Another long day done! Jim's parents came to visit and give us a little break, which was SO nice! It is beyond frustrating being 20 feet away from half your family and not being able to see or talk to them! The girls cultures haven't finished to know exactly what bacteria we're dealing with, so until they come back and we find out they are the same, they can't be in each other's rooms and we have to wash going between the rooms.

So who's first? How about Isabell... I don't know if I was clear enough at 3am last night, but she really really isn't nearly as bad as her sister. I know I've posted some pictures on Facebook of Anabell as she was getting worse and worse yesterday, but Isabell really doesn't even resemble her. She has a very few spots on her face, ears and neck, but not the big open sores like Anabell has. I brought her in purely because she had the red swollen skin on her chest and legs like Anabell had a couple days ago and seemed sore when I picked her up. But with would think it was the end of the world for her! She screams bloody murder every time they even grab the blood pressure cuff (maybe she has ptsd about blood pressure readings from her mommy?) So that's been fun! But all the nurses think both girls are crazy they take their meds so well! Every new nurse is like do you want to give it to her? Maybe a juice chaser? Put it in a cup first? I'm like, stop, just take the cap off and shoot it in her mouth already, you're making this too difficult! They look at me like I'm crazy, cringe and go ok... and the girls gladly suck it down like a straw faster than they push the syringe! But her plan... she needs to eat, drink, and take her meds orally before she can go home. She is eating ok, takes her meds like a champ...but she won't drink anything. We've tried every juice you can imagine, water, milk, and all she does is take a sip, says it's icky and won't touch it again. So they can't back off her IV fluids, they can't take out her IV, and we can't go home until that happens. (sound like her in the NICU, breastfeeding/bottles anyone?!) But if she can't step up her game, we can probably go home tomorrow. She has some pretty nasty diarrhea from the antibiotics, but other than that she's doing pretty well. We had a tea party, sent some fun pictures and videos to dad and sister and watched Tangled no fewer than 527 times today! :s But at least it wasn't Frozen!

And Anabell... You really can't tell she's the sicker babe! Seriously! That girl is guzzling all the fluids you can find her, eating everything in sight and being her silly little self! She had fun showing grandma that despite the brace holding her IV on her arm, she can lean back and drop grapes into her mouth since she can't bend it enough to reach her mouth with the brace! Then she'd giggle and giggle! She got her catheter out today and after tinkling a little on my leg she got up and sat on the potty and finally pooped for the first time in a couple days! Sorry about the TMI, but I've never seen a kid poop so much! Somehow this whole experience has made her rock the potty training! But we're almost positive she will be discharged tomorrow. But dad says she has been coloring, taking silly pictures and videos and they have watched Aladdin no fewer than 527  times today! But she has also become quite the fan of Toy Story and has made her rotation through all 3 Toy Stories quite a few times, I know a couple people that will be pretty happy about that one! The creams they started putting on them has worked wonders on her blisters, and they are clearing up quickly! She is still pretty puffy, but I'm just so glad to see her smiling again!

That's pretty much the gist of life right now. Isabell and I had an awesome nurse that let us take a couple hour nap, so I'm finally almost functioning again! But if I don't get to bed soon, that won't last long! So goodnight, and thank you for all your prayers! They seem to be working yet again!

Heather, Jim, Anabell and Isabell

August 14th 2015 3 years later we're back to where we started

I decided instead of filling your Facebook newsfeed with all the updates, to pull this old blog back out. It was always about the girls after all!

So a week ago Wednesday, on August 5th, the girls had their first symptoms of Impetigo. Brought them into their pediatrician, sent us home with an antibiotic cream and all was good. For once, I wasn't stressed about them being sick, or freaking out, or threatening to never leave our house again. Well that backfired! Jump ahead exactly a week... This last Tuesday night the girls were up ALL night taking turns screaming themselves to sleep. After having enough with their sleeping problems for the last month, since we came home from vacation, we decided we were sticking to our guns! They were not coming to bed with us, we were not sleeping on their floor, they could cry all night if that's what it took... And that is exactly what it took, they cried all night. Wednesday morning I very sleepily brought them to our MOPS steering meeting, where I noticed Anabell had red hives and was all swollen around her neck. Figured it was just from her crying all night and went on with our day. Until she started crying after her nap and wouldn't let me touch her. So we brought her into the ER Wednesday night and they sent us home with oral antibiotics and zyrtec for the hives. Isabell had a couple new spots but nothing serious. Then by the end of Thursday Anabell just cowered and wouldn't let anyone near her, she had a couple open sores on her and I just couldn't watch her be miserable anymore. So we brought her back to the ER. It was the same DR from the night before and he was worried about the drastic change and new spots popping up every time he walked into our room. So Anabell got her first ambulance ride to the University of Minnesota Children's Masonic Hospital. (Same hospital I did bedrest when I was pregnant and the girls stayed in the NICU) They put her on some pain meds and IV antibiotics and she seemed to be doing much better this morning after finally getting a little sleep. Then after her nap this afternoon, all the red hives she had turned into blisters and started spreading like wildfire. Her whole scalp is now covered with them, a lot of her face and starting on her arms and chest. So dermatology came in and looked at her and the current diagnosis is she has the staph version of Impetigo and it is releasing toxins into her body and it has spread throughout her body and is causing the new blisters. Also known as staph scalding. They are pretty sure it's going to get worse before it gets better and she will likely lose a good portion of her outer layer of skin all over her body. Then tonight she was doing better again and was hanging out with daddy while I went to get Isabell (I'll get back to Isabell soon) and her IV ended up swelling up and getting extremely painful. So they had to replace it and it sounds like it was quite the ordeal. She's had a rough night after all that, but I just checked on her and she looked pretty peaceful sleeping and they started her treatment of her sores so they were looking a lot better too...but it was 2:30am and dark so I will know more tomorrow.

Back to Isabell. Through Anabell's whole ordeal she has been a champ. After we realized Anabell was getting admitted, Jim brought her to my friend Jessie's house. She seemed to have had a great night overnight and fun today playing with her friends. In fact, when I went to pick her up she didn't even acknowledge me and didn't want to leave! I'm grateful she has somewhere she was that comfortable and I didn't have to worry about her while I was worrying about her sister! So I had talked to her pediatrician this afternoon and updated her on Anabell and asked if we should start Isabell on antibiotics also. She agreed, and my game plan was to get the antibiotics, run home, feed Chompers, shower, pick up Isabell and bring her to Jim's parents. Was going fine until I noticed she had a lot of the red swelling Anabell had 2 days ago. Still not as many blisters, but after watching that exact same looking skin turn to giant blisters right before my eyes today, I decided to call Anabell's DR at the U and see if I should bring Isabell in too. Decided that was best...and here we are. Admitted next door to her sister! :( On the bright side, after some mild trial and error with Anabell, we have a better idea what we're dealing with, caught it earlier and can start treatment quicker so hopefully she won't end up as severe as Anabell.

I'm finding the irony in a couple things here...3 years ago exactly I was on bedrest 2 floors below and down the hall and was just starting this blog! Unfortunately the food has gotten worse in 3 years, but other than that not a whole ton has changed, besides why in the world do kids have better rooms than pregnant ladies?! Then I can't believe I quarantined the girls last cold and flu season because I was so freaked out about them ending up back in the hospital, then the first sickness I don't freak out about is the one that lands us there. But it is what is and here we are. I'm going to go try and get my 2 1/2 hours sleep before they come do vitals at 5:30am again and I will update more as we know more! As before, we would be so extremely grateful for all your prayers! It is the hardest thing in the world watching your child in so much pain and not being able to do anything about it, and here I am watching both of them. My heart hurts, but I'm giving it to God to fix along with my babies. I just pray they can have comfort and healing soon. And thank you for all your prayers!
Heather, Jim, Anabell and Isabell