Thursday, February 26, 2015

All in a days work.

I have a moment of peace, so I thought I would capitalize on the situation... so much has happened in the past couple of weeks...
Monday (Feb 16th):  Isabel got weighed and only gained 2oz.  Likely due to the late afternoon weighing vs early morning of the previous weights.  It has been 2 weeks and not much luck.  It was almost 5.  The nurse said Dr.Johnson would call me back.
Tuesday (Feb 17th):  Happy Birthday mom!  1st day back to work for me :(. 
I get a call from Dr.Johnson... its time for a tube feeding.  When would I like to come in?  'I can wait until tomorrow morning if that is more convenient'  Why would I need to wait?  The baby needs food!  The nurse calls me back and says they can admit her to the hospital around 1pm... admit her??  Huh?  This isnt doen in the doctors office? lol.  I laugh now bc I was in so much shock that the nurse felt bad for me and offered her apologies for the misunderstanding about 50 times.  How long is the stay? 'Oh, about 2 days!' Scramble... get Al picked up, Hope to a friends house, make a quick crock pot meal so no one starves tonight, pack my bag- how many days will I be there again??, pack Isabels bag, go to hospital.  Breathe.  Oh, yes, dont forget my work computer...
Wednesday (you get the picture on the dates): 
The hospital employees/drs/etc are amazing.  The bed is not too bad.  A little cold-Beau would be in heaven here... but I cant leave my baby so he has to stay home with the other babies.  She HATED getting her ng tube.  Cried for at least an hour straight after she got it.  She is my sensitive child though... I can tell this already.  Its like she feels pain more intensly than Al and Hope do.
Thursday:
I place the tube myself.  We are released.  Whoo hoo.  Home to laundry and house keeping... though Linda really did an awesome job trying to keep up with that for me.  Lord knows Beau doesnt do laundry.  I have mentioned the time in college when he resorted to wearing his biker spandex as underwear bc it had been 3 weeks since he had done his laundry??
Friday/Saturday/Sunday:
Iowa cousins come to visit.  Trenten (7), Addy (4), Al and Hope get along fabulously so I thought, why not?  It turned out great.  Kids played well and were a good distraction all weekend.  I even made dinner on Friday... though by Saturday I needed a SERIOUS mental break so I sent every one (but the baby, of course) out to the farm for dinner so I could get some peace.  Red wine. TV. 4 hours of me time... bliss.  Rewind.  I had tried to take the baby with pump and all to the soccer game.  Doing tube feedings in the cold metal stands at a sporting event is not very fun or relaxing.  No one else seemed to notice my anxiety, so thats good. lol.

Monday (Feb 23):  I forgot Hope's pre-school class snack.  Ugh.  Do laundry, grocery shop, clean house ... I did just have 3 extra people and children in my house while it was snowing.  Dr. calls- they are going to move Isabel's surgery up to next Tuesday. *It was going to be March 24th.  Ok!  I am so extatic at the possibility of an end to the waiting game.  Then comes the laundry list of things that have to be accomplished before the surgery.  Wow.  My head is spinning.  Who is coming in town?  How will the kids get fed? Laundry get done?  Dog get walked? Kids get to and from school?  Homework get done? Oh, shit.  I am working now too.  Got to go and make dinner...
Tuesday:  Get kids off to school.  Hope is staying the whole day bc I have a work meeting from 12-3.  Eeps is watching the baby bc she is awesome and a RN so she knows how to do tube feeding.  Before meeting- get dressed, feed baby, get tube feeding in car bc baby is not finished, get Synegist shot, meet friend in parking lot to switch cars so she can take baby back to house.  Phone call- its the school... Hope is sitting in the office waiting to be picked up- 30 minutes late.  Shit!  I forgot to pack her a lunch and tell the teacher she was staying all day today!! oh my gosh.  Eeps picks her up.  Hope says to me on the phone 'Mommy, I will be fine.  we are going to have fun'  Can she hear the panic in my voice?  Then she promptly turns to Eeps and asks her to take her to McDonalds.. she is good.  I get home from my meeting.  Shit!  I threw away the tube feeding adaptor in the dr. office when she got her shot this morning.  I have to go up to Childrens hospital to get another one... Insert other RN/dr. friend Jenny, thank goodness for friends with medical degrees.  Race to hospital, race to pharmacy to get meds Isabel has to go on pre-op, race home.  Must make dinner, must do homework, must drink red wine.
Hope loses her 1st tooth!!!!  Scavenge for a dollar.
Wednesday: I am taking off the month of March... obviously wasnt working to work and keep life together.  Feeling so much better today.  Linda is here.  Run errands.  Take Tiger Cub troop to the fire house for a tour.  Do reading homework- why is it 30 pages long?? Everyone is sleeping.  Beau is in Atlanta.  Iz pulls her tube out.  Damn.  Its ok.  Ive got this- whew. Bedtime.

Wednesday, February 4, 2015

Just an Update

Hope 5 years: 47 inches (99th %) and 47lb (90th%)
Isabel 2 months:  22 inches (35th%) and 9lb 4oz (12th%)

Isabel had a cardiology appointment today and they think she is doing fabulously.  Dr. Johnson thinks that her weight gain is great (3-4oz/week) and all without an NG tube- a feat he seems to think is worthy of admiration.  Go Isabel.  It must be those Reinberg genes kicking in at the last half ounce determined to continue to eat... lol.
She remains difficult to feed and takes FOREVER to drink only 2-3 ounces, but I am better.  I spend as much time as I can trying to feed her and when I have to stop, I do.  My world has two other kids, laundry, a home, errands, a husband, and soon a part-time job,  so there are only so many hours in a day to feed a baby.  But I do my best because I love her so much it hurts.  I feel very "zen" about our life right now- it just is what it is.
She will be presented to the cardiothoracic surgeons next wednesday and they will hopefully give us a date range of when the surgery will be in March or April.  It brings tears to my eyes thinking about how painful the surgery/recovery will likely be for her.  Ugh.  I cant think about it.

I want to post more pictures-- but blogger is giving me an error msg.. more to come as soon as I figure this out!