Sleepless Nights

Well, it seems that very little has changed in the sleeping department with Sasha. I had been sleeping in the house alone for so long that I had forgotten what poor sleeping habits Sasha (and dad) have. Sasha demands that we are by her side when she is sleeping and she does not tolerate us being far from her bedside. Before her surgery in December, I was determined to change her habits post-op so that our household could sleep more sleepily at night. BUT, Sasha has other plans for us. She is relentless and to be honest, sleep training at this point seems impossible. At this point I am more worried about the sleep habits of Sasha's soon to be born sibling. Will Jonathan and I not be able to teach this baby good sleeping habits? We never wanted Sasha to be upset and we always ran to her whenever she made a sound. Now more than ever we want her to feel safe and loved but at what cost? In my opinion, we can't continue having Sasha's sleep habits disrupt our whole household.
Anyway, maybe I will try and get some sleep in the spare room or maybe on the couch with Sammy while Sasha takes up 3/4 of our bed while Jonathan is curled up in a corner of the bed.
Good night. I hope everyone sleeps for all of us.

Emesis

Emesis is our nemesis. Sasha has been on Metoclopramide for a few days to help with vomiting. After her fistula started venting again, she hadnt vomited at all yesterday and I thought it was gone. Last night, she guzzled about 2 ounces of her Resource mixed with 2 oz water and seemed thirsty, moving onto water from her bottle. She vomited early this morning, two totalling about 40 CC. Compared to the clear odourless vomit of before this was slightly brown and mushroom smelling including some of her food from yesterday. Wouldnt it be nice to close one door and only open one other? Thanks to Uncle Ofer for all the blue pads he helped us source, blue pads are our good friends.

Hold me closer tiny dancer

Hi Sasha !
Hey cutie, it is Kim, your dancing nurse friend from 4D. I just returned home from my family vacation away in Grand Cayman and I checked in to see how you were doing. I missed your happy departure from the hospital. I am so glad that you are at home with mommy and daddy and showing them your gorgeous big smiles ! I hope mommy is doing really well with the baby in her belly and getting some rest too. Please give Raggedy Ann, Raggedy Andy and baby Raggedy a big hug and kiss for me and here are some for you XOXOXOXOXO.
Bye sweetie !

Kim (R.N from 4D)

Fizzer fizzing again

Sasha's fistula is draining again after about 4 days of empty ostomy bags. It is probably the water she sucked back at around 11pm last night, she has mostly refused food or water in several days. The fluid is clear, no blood. We had hoped it had closed but wondered how that was possible with all the water Sasha was drinking before. That would have been the second major and completely unlikely surprise of our return, after the GI bleeding stopped spontaneously on the second day.

Reconnecting with Ellsworth

We started Saturday with a visit from Sasha's pediatrician, Dr Michael Peer, who thinks the clear vomit may be produced by all the coughing, and the cough may be from a bug she picked up. Sasha loves Dr Peer, she always has big eyes for him, and we love him because he is so positive.

When science doesnt provide a clear answer, such as why the bleeding stopped, we appreciate simple thoughts like: Sasha really wanted to go home, good for her! The good doctor splits his time between private practise at Bathurst and St. Clair, U of T's Department of Pediatrics and his paediatric clinical education work at Sick Kids so we bumped into each other while away from home and he joined us in the lobby on the day of our departure. Dr Peer's partner Karen is a nurse in CCU and 4 so we would also see her 'around'.

It was a lovely day and I walked barefoot over to neighbours who were adding plants while little James played, and we were joined by Liam from across the street, both are within a month or two of Sasha's age. She just looked around intensely, too early for smiles. Later we went for a walk, dropped in on an open house, bought a poppy and, after I wished Dvora and her kids Gut Shabes, were invited back to the Chabad Midtown garden, where Sasha spewed all over me while sitting on the climbing fort. Dvora didnt blink an eye. Walking home, we talked about Sasha's Hebrew name Shifra, which we remembered to mean Strength (um, actually it means Beauty). Both are true of our little girl.

That night mom, dad and Sean stayed for a barbeque and Kenny, Cindy and Lynn visited and hung out until Sasha went to bed. It took awhile for her to fall asleep and she woke up often during the night.

Navigating the stairs

Sasha was about to walk when we enterred hospital and with all the setbacks and the size of her belly we are back to carrying her everywhere.

Coming home with IVs we have to also carry all her bags and tubes and pumps, unless we have put heparin in the IVs and she is then footloose and fancy free, as much as you can be in our arms or on your butt.

Here is a funny picture of me bringing Sasha down the stairs with all the paraphenalia.

Vomits

The last two nights Sasha has vomited a brown mushroomy smelling vomit. She did this before we left as well. And her fistula is not emitting. We are not sure what to make of it, nor is Dr Goldman. Her waist ballooned from the mid 50 cms to over 60 cm and seems to have subsided back to 59.5cm.

We always worry when the fistula output drops that we covered it when we put on her plastic ostomy bag and the eakin seal putty.

On a happier note, here is a picture of Sasha's first real bath in 5 months. Yeah Sasha!