I'm apologizing upfront for not spell checking or gramatically correcting the below posts.
Day 18 Friday - Brooke had another head US today and ventricles are still holding steady and no need for a shunt at this point, yay! Praying it stays this way. She’ll have another one on Monday, just to keep an eye on them before she (hopefully) heads home on Tuesday (yay!). She was going to have her ‘car seat test’ done today, but Dr Bowman preferred they wait until Monday to do it, so we’ll bring the car seat in and have it ready for her test on Monday. Physical Therapy stopped in again and we worked on her knees and feet, so far we can’t do anything else since her hips have not been evaluated yet. She likely will not see the ortho until her first SB clinic visit which will be the Tuesday after we get home, sounds like we’ll be visiting the clinic every Tuesday for the next couple of months. Going to have to work that out with work when I get back to work. I don’t think we have much of a choice since she’s so young and needs some things done early on, the earlier the better I keep hearing from PT and others. I only got to stay with her for a few hours today, but hopefully I can stay a little longer tomorrow. Nothing else eventful today, which is always good!
Day 19 Saturday - Braxton got to go to the circus today with Lori, Anna and the Jaspers, he had such a great time and so did mommy because she got to spend most of the day with her little pumpkin, Brooke (Braxton likes to remind me that she is NOT a pumpkin, but is his baby sister - LOL). Found out today that I need to do a 24 hour ‘care stay’, meaning I’m here for 24 hrs with her and handle all of her care, wound dressings, etc. Glad someone told me this. I’ll be heading back to the hospital tomorrow afternoon and staying through Monday afternoon for my ‘care stay’. Nothing much goes on over the weekends except the Dr’s doing their rounds and routine care/healing on Brooke’s part.
Day 20 Sunday - Braxton and I headed to Trader Joe’s quick to pick up a few things and some holiday treats for the nurses and staff on Brooke’s floor, no time to bake or make treats, so going the easy route. Braxton LOVES going to Trader Joe’s because they have ‘his carts’ there. They have small carts for the kids to push and he loves it! He’s a great helper, lets just hope he is with this sister too.
I got to the hospital a little before 2pm to start my 24 hr care stay and will obviously be staying through tomorrow to 2pm at least. This was a little more demanding than I thought. Her wound dressings are constantly getting slightly dirty and need changing often, which is a bit of a chore, but has to be done. Gets a little hard to eat, pee, pump, feed, change dressing, clean up stuff, try to sleep for 30 minutes and start all over again. Needless to say, I did not get much sleep during the care stay. It all went well though and so far she’s still on track for going home on Tuesday.
Aunt Boober is flying in tomorrow night, yippee! So I will definitely be leaving around 2pm to head home quick then off to the airport to pick her up. It will be nice having her here to help with Brooke.
Day 21 Monday - one more day to go. She got her car seat test after I left today and passed with flying colors. She slept through the whole thing and her vitals didn’t budge and she didn’t seem bothered at all during any of it. She also had another head US and haven’t heard any update, but the nurse did mention that if there were changes we would have heard, so no news in this case is good news. She has to have her hearing test before going home as well. Not sure what other ‘new born’ tests, items she needs to have done. Need to follow up on that. PT comes by every day and I work with her as well. She is getting some bend in her knees, in the right direction that is. They are still hyper extended when resting for the most part, but they are loosening up, slowly but surely. Her little feet have made progress as well. I’m trying to figure out how to navigate all of the services she may qualify for. I’m not sure she qualifies for anything, but the PT did say she’ll get the early intervention program and she made the call and I should hear from them in 2 weeks, but that’s state govt so relying on a state of IL employee to contact me and actually get something done is like sitting on frozen solid lake in northern MN in the middle of winter and waiting for it to melt come spring. She did give me a # to follow up with in 2 weeks if I don’t hear from them, which likely I will have to do. I’d like to try and contact the Easter Seals daycare as well that is in Villa Park, but if it is outside of Cook County it sounds like it won’t be an option since we live in Cook County. I really need 3 days to sit down apply and make calls to see what I can get taken care of for her. I want to make sure she has everything she needs for her development. Really need to get on that.
Called to check on her in the night and she’s eating and sleeping like a champ - yay! AND - she is going home tomorrow barring any unforeseen changes. Picked up Aunt Boober too, she can’t wait to meet our little Brooke!
Day 22 Tuesday - Todays the big day!!! 3 weeks old today too, so hard to believe that it’s been 3 weeks already. It will be so nice to have her home and not have to head back and forth and split my time between my bebes. ;o) She got her hearing test today and everything went well. I need to try to find out if she got her Hep B vaccine or her PKU test done, no one knows if they were done at Prentice, so hopefully the records got sent to our Ped. Need to make an appt with him and also with the SB clinic. The nurse tried calling but couldn’t get one made, so I’ll be calling tomorrow. We got a whole list of instructions and care for her and symptoms to watch for, also lots of supplies for her wound care. She has a lot of stuff to take home for such a little pumpkin.
SO HAPPY TO BE HOME!!! We made it, yay!!! She slept all the way home in the car and is eating and sleeping like a champ. She also has great alert time. She recognizes her brother’s voice and the dog barking, neither seem to faze her too much.
I’ll try to update more later - tired and probably will be for the next year now. ;o)
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