Today marks TWO weeks at home!! Ella turned 25 weeks old on Monday (she's as old as I was pregnant when she was born)! Saturday she will be 11 weeks adjusted. Next Tuesday she will be 6 MONTHS OLD!!! (I'm telling you this now because who knows when I'll get a chance to post again). As of yesterday Ella is 9lb 10oz!! Dr. R increased her feedings a whole 3ml yesterday, she's now eating 45ml/3hr.
We are still loving every minute of being home... well, almost every minute (I'll get to that shortly in the section titled NURSING).
We stay busy with our doctor and therapy appointments. We actually only saw the eye doctor this week; hopefully after next week we will get to push our appointments to every other week with the eye doctor. We are seeing our GI doctor every 2 weeks although I call and report in to her office a couple of times a week on the state of Ella's poo. We will visit the surgeon for a check-up on the 15th. We see the pediatrician again next week. We don't see the Neurologist until next year!
We have Physical Therapy (PT) and Occupational Therapy (OT) each once a week. Yesterday the CBRS (Childhood Behavioral Rehabilitative Specialist) showed up while PT was here. The ECI (Early Childhood Intervention) coordinator never confirmed the day/time with me. Today OT was supposed to come at 8am, we were ready and she called to reschedule (under the weather). We also had the Infusion Company Nutritionist visit today. Friday the ECI Nutritionist is coming (do I need both, probably not but I have to meet them to figure out what they do to determine what we do and don't need). Don't worry if you can't follow what I'm talking about... I am still trying to figure out who all of these people are and what their role is in Ella's development.
It's kind of ironic that we are on contact restriction with all of these caregivers, right? I'll get it streamlined, it just takes a little time.
Tomorrow we are having our first professional photos taken! The dilemma... what will Ella wear!?!?
Ella just rolls with it all. She cares about eating every three hours, taking things in for a while and sleeping. If PT shows up and she isn't in the mood... well, she's just not in the mood. Thankfully, PT & OT are skilled with calming babies as well as assessing and exercising them. We have lots of homework exercises too.
We have been taking her out in the stroller for walks as well as her Ergo carrier (we use that for walks & around the house). We did take our first INTENTIONAL car ride earlier this week, the sole purpose was to calm a fussy girl.
She is still sleeping really well. We still have night help coming in two nights a week. Ella has recently started to get a 'fussy time of day' late afternoon/early evening until bedtime. She doesn't fuss the entire time but she is notably fussy. It was hard to leave her with our night help last night and listen to her cry, fighting sleep, and not go out to hold her. Thankfully she calmed before I turned my own lights out.
She continues to give us the greatest smiles! Her coo's and noises are so fun to hear! She seems to be starting to mimic when we make a noise to her she repeats it, and so on. We are still waiting on a laugh... But she's absolutely adorable when she sneezes... she will sneeze and then act like she's going to sneeze again, you hear "ah.... ah..." (in that tiny baby voice) and then NOTHING. No second sneeze. She cracks us up!!
Last week I learned that out of the four SBS babies that the Infusion Company supports who recently were discharged, we are the ONLY ones who came home without private duty nursing in place!! I'm a little astounded that whatever needed to happen didn't happen to get us set up, but I've been working on it since then. I went down to DSS on Friday to figure out our Medicade coverage. According to them we are still covered and we are eligible for private nursing; the nursing company just has to do an assessment and file the paperwork.
It's been a lot more involved and every step involves "hurry up & wait". The current nursing company got the paperwork submitted today. I have a different nursing company, specialized in pediatrics, coming out to do an assessment tomorrow. I hope that we will have private nursing in place very soon which will at the very least cover hanging Ella's TPN every night... anything else would just be a bonus.
Last Friday I cried "Uncle". No more hanging Ella's TPN for Mommy! The stress and aggravation it causes me just takes away my JOY of having Ella home. I told the Home Health company that I wanted someone to come in to hang her fluids every night until we get the private nursing in place.
Of course, this request is complicated too.
Last night was the first night since then that I did it on my own again... and had problems with priming the line again... and ended up calling the on-call nurse to send our nurse out after all. I have become the Infusion Company/Home Health's "problem child", in the sense that I refuse to do the nursing care myself anymore.
Even though Insurance provides us with 120 Home Health visits annually (includes all of the therapists, etc), the Infusion Company is telling me that I can only use so many a month in nursing... I said I don't care what we have to do to have someone out here every night, we need to work something out. I'm on the phone with these various people a lot every day. For now, I have to call the Infusion Company every day and explain this same thing every day in order to convince them to authorize a nurse to come out each evening. It makes me feel like a PITA but it's worth the peace of mind it gives me in the end.
That's the battle...
But the nights we have had someone here to hang her fluids, where I could be Mom, not Nurse... those nights have been wonderful! While I'll always worry a little bit about the technical nursing parts of Ella's care, I don't have to "own" it. The first night, Friday... Grandma and I were able to have dinner and then I was able to sit on the couch and hold Ella while Grandma and I enjoyed a glass of wine! It was a perfect evening.
I don't expect every evening to be perfect but I do plan to have a NURSE here every evening to hang Ella's fluids. If I have to be a PITA to make that happen, so be it.