Saturday, September 22, 2012

Discharge & Settling In

I wrote this Friday with the intention of posting it last night after the Home Health Care nurse left.  Unfortunately we had a mishap - a scary mishap - that threw everything off (blood in her fluid line).  It's been resolved and thankfully the nurse had not left when the problem was discovered but Mama wasn't happy.  So when you read this, remember it was written Friday.



On Monday Dr. H called me at 10am and we talked about it being time for Ella to come home.  Of course, I've known more and more that she needs to get home, just waiting on the FDA (and the snafu with the paperwork).  Dr. H talked about his belief that the FDA would not approve the Omegaven because her numbers have improved dramatically since being on the Omegaven.  Although it's backwards logic, that was my fear as well.  She's doing so well her numbers don't justify the special approval from the FDA for her to use the medicine (responsible for her drastic improvement).

We discussed setting Wednesday as her discharge date regardless of whether we had heard from the FDA.  I agreed with the plan so long as the GI doctor, Dr. R, who would be following Ella after discharge was on board.  Dr. H agreed and reached out to Dr. R.


Immediately after I hung up with Dr. H I had a meeting with my boss, realizing that I had to (finally) wrap up work that day.  Work has been so accommodating to our situation which is certainly one less thing to worry (much) about.  As of Tuesday I am off work for 8 weeks.

Tuesday was full of preparation.  I had an eye doctor appointment in the morning eating up a good chunk of time.  Mom came late morning and we ran errands, organized, visited Ella and CLEANED.  Wednesday I took the dogs to the vet at 7am to get them up-to-date on everything for the rest of the year and so they could get baths.  I went to NICU for rounds and headed to Target while mom went to the grocery.

Too much detail, sorry.


We got back to NICU around 1pm with lots of goodies for the staff.  It was a celebration deserving of sweets!  

We had a lot of stuff accumulated at her bedside that we had to load up into the car.  Mom & I took a trip down to the Pediatric ER so we would know where it was, how to get there (both thru the hospital and from the road).  Hopefully we won't need to go there but I feel better just knowing how to get there.

We had our discharge meeting and said lots of goodbyes to many of the staff who were there on Wednesday.  At 3pm, we took Ella off of her TPN (IV fluids) and changed her into her fabulous Homecoming outfit.  We took lots of photos, said lots of goodbyes.  NICU gave us a big goodie bag of stuff for Ella that I still haven't been able to go through completely.  

And we were off!  164 days later, we are out of the hospital!!

We got home and had a couple of hours to just enjoy the special time before the Nursing phase of being at home started. Ella got to see her beautiful nursery and meet the dogs.  I am so pleased with how well the dogs took to Ella!  I'm not surprised but it was just so fun to see.  I still smile when I watch them watch Ella!


A little after 5pm our medical supplies were delivered - 4 big boxes!  We had a second delivery (for her G-tube that we don't use) around 8pm - 2 smaller boxes.  The Home Healthcare Nurse, Nurse Jacqueline, arrived at 6pm.  We broke into the boxes and she started my education on hanging Ella's fluids.  It was very hands on as she walked me through everything (there is a LOT to it).  Nurse Jacqueline didn't leave until close to 8pm!  I had a brief cry as we were wrapping up, after she left, because the medical part was exhausting and overwhelming.

At this point we had her pump & fluids on our new pole which we carried around the house (it rolls, but not well).  That's the biggest difference with Ella vs. an average newborn.  For 20 hours a day, if you need to take the baby with you anywhere in the house (or elsewhere), you have to take the pump, fluids and tubing (so you don't have a hand for something else, like a glass of water).  The dogs didn't take to the pole very well, understandably so.  

The first night at home went well.  I was "on duty" with Ella through the first part of the night.  I didn't relax enough to really let myself sleep inbetween her feedings/diaper changes every 3 hours.  Ella really did sleep well though.  I know it will just take time to allow myself to sleep when I'm "on" with her.  At 3am my mom took over.  This way we were both able to get decent blocks of sleep.


On Thursday morning my priority was unpacking the medical boxes and bags to get it organized/labeled in storage bin/drawers. I felt much better after I got things sorted out and organized.  It will be much easier as I learn more what I need when, to easily put my fingers on it.

Thursday was a good day.  Other than Home Healthcare, we didn't have any appointments.  Nurse Jacqueline came back at 4pm to walk me through taking Ella off of her fluids (for 4 hours).  We went for our first walk outside!

Since Ella is on contact restriction, when a neighbor - across the street - and her daughter, yelled her congratulations to me I instinctively (unknowingly) took a step back.  She immediately reassured me that she wasn't getting close, she understood we had restrictions.  At that point I realized what I did, taking the step back.  Funny.  This contact restriction will take me a while to get used to because I would love nothing more to introduce Ella to EVERYONE!

Nurse Jacqueline came back at 7pm so we could hang her fluids.  She had me do everything and I had created a chart to better organize how to manage her additives (what medicine goes with which syringe with which needle and how much).  Her fluids were hung by 8pm, so it was a much quicker process the second time around.  We also used her BACKPACK instead of the pole this time.  She has a mini backpack that is fitted for her fluids and pump.  We can sling it over a shoulder - and gather up the line - and it makes moving around with Ella much easier than using the pole.  It is also necessary for getting to doctor appointments, etc.  We LOVE the backpack!!

We had another good night.  I did a better job sleeping in-between feedings.  Ella slept well again.  Grandma took over at 3am.


Today we had a pediatrician appointment at noon.  Our day was pretty much centered around this outing.  Grandma got dressed early while I fed Ella, then she took over so I could organize Ella's medical paperwork prior to the appointment and get dressed.  Ella is not crazy about her car seat.  She cried all the way to the doctor and we had to feed her when we arrived.  They were good at getting us back quickly and said for future visits to be sure to ask to be taken back immediately (since she's a preemie).  

Grandpa came for the weekend!  An extra set of hands!  He fed Ella this afternoon while I got a late lunch and Grandma started to do some early prep on dinner.  

I was on my own this afternoon to take Ella off her fluids.  Mom & I actually high-fived when that process was finished successfully.  Nurse Jacqueline is coming back at 7pm to oversee me hanging her fluids, if all goes well Nurse Jacqueline will only come back 1x a week for dressing changes/blood draws.

Nurse Kristina, one of the nurses we got friendly with in NICU, is coming over later tonight to watch Ella overnight so Grandma and I both can have the night off!!

For the first time in 165 days, I've not stepped foot in the hospital!!!  Let's keep it that way!

It's been super busy but we're doing good.  And we are very happy!!  We're learning which also leads to come comical moments.

For my local friends who have graciously asked over the last five months what they can do for us, my friend Lynde set up a meal planning sign-up online.  I wish I could take up friends on offers of support - watching Ella, doing dishes, etc - but contact restrictions prohibit Ella from being around anyone who is not a family member/caregiver.  I'll write a post more about this one day.  However, if you would like to bring us dinner you can sign up here:


  1. Wow! So much to organize & deal with but I am so happy for you to have Ella home. I wish I lived closer so I could bring you dinner. Is there anything us far away friends can do?

  2. Wow! Congratulations! It sounds like you are off to an amazing start! That's so great! I'm thrilled to hear that you are already feeling more confident about all the medical care. It must be completely overwhelming. Remember that everyone else that has done it has gone to nursing school! It's a LOT for you! So be patient and congratulatory with yourself!

    Sorry, like Tiara, that I'm far away and can't make dinner! Is there a delivery service that we far away folks could contribute to?

  3. Wonderful news! Enjoy every moment.

  4. Congratulations on getting home with Ella.

  5. Sounds like you are getting things organized and soon it will be old hat.....kinda like IVF injections :)
    So happy to hear Ella is home and sleeping well.

  6. Congratulations on coming home!! I STILL don't sleep soundly and Elsie is 15 months and doesn't have all the concerns you do Ella. Try to take advantage of the nurse and Grandma as much as you can!


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