Wednesday, September 26, 2012

One Week At Home!

Another CaringBridge update

Grandma & Ella

It's been a week now that Ella has been home!  What a wonderful (and stressful) week!  Her coo's and alertness have increased daily!  She has so much more to take in.  She watches the dogs, they lick her hands.  She loves going outside!  She adores being in her Ergo carrier.  She's getting used to the car seat, now that we have the adjustments made correctly for her size.  She sleeps really well in her Nap Nanny (and to think I almost didn't get one).

Our days are busy.  Monday morning we saw the eye doctor at 8am (and will for many Monday mornings to come).  She did really well on the trip to/from and at the eye doctor.  She had a good report too.  We have learned that we can request to be taken straight back to a room to limit her exposure at all of our doctors offices. 

Nurse Jacqueline had to come later that morning to draw weekly bloodwork. I also had multiple phone calls with the infusion pharmacist, infusion dietician, and several others.  

Tuesday we had THREE appointments.  Actually, I left Grandma & Ella alone Tuesday morning because I had an appointment for Ella that it was medically recommended she NOT attend. It was at the WIC office.  Because of Ella's condition, the fact that she's not permitted breastmilk and requires a special, very expensive, formula she is eligible for government assistance for her formula through WIC.  This was a humbling experience for me, as until Ella was born and I was advised to apply for medicade (which I was able to do without going to DSS personally) I have never experienced a government assistance office.  We are now officially part of the 47% (I won't get political here).  

I'm glad we were exempt from bringing Ella to the appointment.  If I had to bring Ella I would have foregone the benefit, no doubt.  There had to be between 2 - 3 dozen children in the waiting room at any given time. I was impressed with how well behaved they all were.  The average appointment is 2 hours, most of that time spent in the waiting room.  When I finally got home I went straight for the shower and to dress in clean clothes before I got near Ella (or touched anything in the house).  I even disinfected the things I brought with me to the appointment, my steering wheel and driver seat of the car.  

It's true, I am officially a germ-a-phobe!

At 1:30 Tuesday we had our first office appointment with Dr. R, our GI doctor.  It went really well.  Dr. R was thrilled with how good her bloodwork was!  Everything seems to be reading in the normal range, or very close to normal.  So going home without Omegaven (or Lipids) does not seem to be hurting us at this point.  

Fortunately/unfortunately Ella, who had been stooling 2 - 3 times a day (which is acceptable), had 5 stools from midnight until noon, just prior to our appointment.  Because of this an increase to her feeding amount was not considered.  We believe she may have bacterial overgrowth (BO) which is something that she had in the hospital and will have fairly regularly due to her short bowel condition.  We are on antibiotics for that now (I had to find a compounding pharmacy after our appointment to get the Rx made up specially).  I am happy to report that in the subsequent 24 hours since the appointment she's only had 1 stool (from which I had to take a sample and send off via FedEx)!!

We were supposed to meet the OT at the house around 3:15pm but I had warned her we might be cutting it close due to our appointment with Dr. R.  We ended up rescheduling for later this week since I had to get to the compounding pharmacy and have her Rx made up before they closed at 5pm.

Every day at 4pm I take Ella off of her fluids.  This only takes about 5 - 10 minutes to get her disconnected and capped off.  At this point she is FREE until I hang her fluids again at 8pm.  

Supplies laid out to hang Ella's fluids
Hanging her fluids is the worst part of my day.  It's getting better but it is extremely anxiety inducing for me (I struggle with anxiety as it is).  The last two  nights I've gotten the process done within an hour.  I say it all of the time, I just can't believe that they make non-medically trained people do these procedures.  Risks to Ella with her line/fluids is infection.  The other risk with priming the pump, getting all of the air out of the line before attaching to Ella is air embolism.  Priming the pump is absolutely the worst part of the process for me, flicking the filter and scrutinizing every centimeter of the line, over and over again.  I absolutely hate it!

I did talk to the infusion pharmacist and Dr. R about priming the line and how much anxiety I had over it, how it can't be healthy for ME to go through that every night (indefinitely).  They made me feel a little better about the priming process, as the pump will alarm if there is air in the line (once it's on the patient).  Dr. R said she's seen anesthesiologists have significant air bubbles in syringes and administer to the patient (that makes you feel warm & fuzzy, huh), so she told me not to worry about the little air bubbles, it would take a lot of air to create an embolism.  She could also tell that I am more than thorough (OCD) about priming the line.  

Because of her medical conditions/needs, I worry a lot.  I worry about her line pulling (displacing from her chest).  I worry about infection.  I worry about her G-tube coming out.  While her home healthcare nurse is nice, after the incident Friday (both with the filter/air in line & with the missing backflow valve causing blood in her line) and the dressing change she did on Saturday (not to my standards) I don't have full confidence in her, which only piles on to my anxiety.  I've requested a new nurse.

She's still not a fan of baths.  
I'm practicing some deep breathing for dealing with my anxiety.  I have Xanax for when it gets really bad.  And some nights I'll have a glass of wine after I get her fluids hung.  If there is ever time/energy I will dig out my yoga video.

Grandma is a good nursing assistant.  She keeps Ella while I have to do/prepare her nurse procedures.  She brings her to me and keeps her quiet (usually) when it's time to detach/flush/attach the line.  

And when we are not being nurses, we are being mom & grandma.  Ella is doing better on her own, in the swing, on the playmat, for periods of time but she still prefers to be held.  We are working on that every day.  We are constantly doing laundry, making formula, warming bottles, changing diapers, keeping things tidy, feeding the dogs, there is always something to do.  

Grandma and I seem to have a pretty good routine in place and very good communication.  I am so appreciative of everything my mom is doing for us!  I didn't anticipate needing so much support... but with Ella's medical needs, it's just something I can't do without help.

Today we had NO appointments!!!  Grandma went to Target & the grocery.  We have been busy with the things I mentioned above, but it's nice because there is a little more time in between to relax or get on the computer.  Tomorrow, Nurse Tammy is coming to visit and we'll also meet our Physical Therapist for the first time.  

Now, it's almost time to take Ella off her fluids...

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:

Thursday, September 20, 2012

Homecoming! (extra photos)

I forgot to cross post yesterday... I'm doing it now as Ella lays on me at HOME!!!  Extra photos for you here!
Our front porch

Ella came home today!!  It's been a whirlwind couple of days preparing for her discharge.  At 3pm today we took her off of her TPN fluids (she cycles off fluids completely for 4 hrs a day) and brought her home!

We had about 2 hours at home before my nursing lessons began.  It took 2 hours with the home health care nurse for me to get the additives added to her fluids and hang them on her new home pump/pole.  That part was good, until it got overwhelming (exhausting).  It will just take practice, which I'll get as this will be part of our daily routine.

Mom came Tuesday and I'm so glad she is here.  It will take two people when I have to be nurse.

The dogs are doing great with her.  They love her!!  They are adjusting to the pole when we brought that out, but they can't get enough of Ella!

So many more details but Ella is sleeping and I should try to sleep before her 12am feed.  Hopefully I will have time & energy to capture the details here in writing tomorrow.

Ready to say Goodbyes

On our way out
Izzy & Faith meeting Ella

The pole, fluids & pump
Now organized & labeled med supplies in my kitchen

Thursday, September 13, 2012

Status Update

We got an update this morning.  The paperwork was submitted to the incorrect office at the FDA.  It is now at the correct office.


If I had not been recently exposed to the absolute difficulty in dealing with trying to get information from government offices I would probably be angry.  Instead, I find it (sadly) hysterical.  We're waiting on paperwork that's been sitting in the wrong place for nearly 2 weeks!

I have no idea what this means for our timing.  Hopefully we'll be able to be discharged next week instead of this week...

Just a reminder of how this is happening.  Since the request to the FDA is for outpatient use of Omegaven, the NICU doctors are working with the GI Specialists office who is making the request to the FDA.  It feels like that game you played as a kid where you whisper a message to the person next to you, down the line and see what the message is when it gets to the last person.  No one has complete control or accountability.

I did get the doctors to agree to consider increasing her feeding amount.  She's been at 30ml for 2 weeks now and doing well.  Dr. R (who was the one who did her last two aggressive increases) is seeing her today!  

Reality Check

I forgot to cross-post this CB post from Tuesday.  Still waiting.

I had the opportunity to "room in" with Ella this weekend.  The hospital provides hotel-like rooms - with a couch that kind-of pulls out into something resembling a place to sleep - where parents can stay in with their baby.  So Saturday was the first time I was alone with Ella, behind walls and a door!!  My folks hung out with us during the day with the TV (yes, a TV & Ella in the same room!!) was on the US Open and later Gator football.  

After my parents left I got Ella down in her crib, I was so proud (she's still not a fan of sleeping on her back).  Overall we had a good night.  Ella does prefer to be held and is obsessed with her paci that she constantly needs popped back into her mouth, this is nothing new.  But we have some work to do.  And of course, I was hyper-aware of every sound she made, being my first night alone with her.  The few times that I did begin to drift off to sleep, the monitor or one of the pumps went off.  And then it was time for another feeding, every 3 hours.

My original plan was to stay with her both Saturday and Sunday nights - Ella turned 5 months on Sunday.  On Sunday morning I quickly realized that I wouldn't be able to work Monday if I tried to stay with her that night too.  So we stayed with her for the day and then moved her back to her spot in NICU.  

I had brought projects with me thinking I'd have time to tackle them, like thank you notes (which I am WAY behind on), my computer (organizing photos), etc.  Yeah, right.  I also realized that the idea I have in my head that I will get things done/organized around the house once Ella is home, well, probably not so much.

I went to bed at 8pm Sunday night. On Monday I started making calls to line up "night nanny" support.

Before I went to bed at 8pm on Sunday, I finally watched the "Happiest Baby on the Block" DVD.  People swear by the techniques taught.  

While Ella had a good day yesterday (thanks Nurse Tammy!), she hit her fussy point again this afternoon.  Tonight, I applied the 5 S's....arms straight Swaddle, holding her on her Side with her paci (Sucking) and Shusshing(white noise - thanks to an iPhone app), then was able to transfer her into her bouncy seat (we don't have a Swing), not asleep but settled.  I need to get a report of whether that lasted after I left.

No word from the FDA on Ella's Omegaven at this point.  Still waiting.  But every day we are a day closer to Ella coming home!

Thursday, September 6, 2012


Another CaringBridge Post.  I went light on how frustrated I was this morning.  How the tears came and had to be blinked back.  How that feeling came back up... that I can't believe that we have to do all of this... pumps, lines, flushes, sterile procedures, nurses, therapists, etc.

Sharing one of the great photos taken by my friend S. (Shannon at Chasing Rainbows).  Isn't she talented?  I'll share more with you this weekend.

It's been quite a hectic day. I had an appointment with our Early Childhood Intervention (ECI) coordinator at Ella's bedside. This is a state run program that assists in identification and coordination of support needs for children with special developmental needs. After talking with her further today it seems they only support needs for current problems, not things she's at risk for. Like they will support facilitating a nutritionist because she has feeding problems but not an occupational therapist (because she is at risk for a cerebral palsy diagnosis in the future). 

Of course I don't care who facilitates what, I'll facilitate it, but I want her to have current and preventative care. Insurance coverage or not. Medicade or not (that's a huge, extremely confusing can of worms with no straight answers and no case manager/contact, well over a dozen unsuccessful phone calls with LONG wait times to talk to a person, who then says they are the wrong person, call "this number" instead; we're told to just wait & see in regards to post NICU coverage).

These government programs are beyond confusing. I've never had to deal with anything like it before. 

Anywho, where was I going?

Oh, ECI. I'm taking advantage because I want Ella to have every possible advantage. But I think there will be redundancies between the ECI program and our medical programs like home health care (HHC). I will just get it all into play and then figure out where the redundancies are to eliminate them. I can't wait to see how many appointments we have weekly the first several weeks until I get it figured out! I imagine things will be quite hectic until I can evaluate and put a workable routine together. 

Immediately after my ECI appointment I had another bedside meeting with HHC. The liaison, nurse manager and primary nurse for HHC all showed up and introduced themselves. Then they went to look for the nicu discharge coordinator and were gone 45 minutes! We had not done more than introductions, I had no idea what happened to them? 

While I was waiting, the NICU Physical Therapist (PT) came by and decided to see Ella during that lull. 

And rounds had been delayed this morning so while PT was bedside, here come the doctors & crew. 

PT finished up and I expressed my concerns about gaps (and redundancies) in what ECI will be covering. She said she would talk to the discharge coordinator about adding OT & PT to HHC for proactive support. 

HHC shows back up bedside after PT finishes. They had been with one of the NICU nurses being taught how to do sterile dressing changes to NICUs standards. The nurse & nurse manager say their goodbyes. The liaison has arranged a room for us to go over pump/tube/flush education for me. 

Did I mention how incredibly tired Ella was this morning? And that her fuss factor continued to increase as the morning went on?

Her nurse was over at the "parents place" supporting a family there. NICU is very full. The nurses all have 4 babies. That's a lot in NICU. So no one was around to deal with inconsolable Ella and I couldn't leave her like that. 

So we tried to do the education at bedside. Ella would scream every couple of minutes. This information is very important for me to know very well. I was completely unfocused and quickly getting overwhelmed. I know I can learn it. I just knew I couldn't absorb it at that time. It just seemed like chaos at the moment. 

Finally we cut the session short. I got a glimpse of things, that's good. I also have a document with step by step instructions, that will help. And I have a website that has resources including videos. That will be a BIG help, when I can take some time to check it out. 

The HHC liaison said she would come back this weekend when it should be quieter. The liaison and nurse will be here for discharge and get me set up at home then. I plan to leverage some NICU nurses who moonlight during our transition at home until I know I can do her medical things without them. 

There is question about private nursing coverage. My primary insurance does not cover it. Medicade might. But medicade is a wait & see mess as to qualification/coverage once we are discharged. So it's the great unknown. I'll do what I need to do out of pocket and figure it out from there. Once I'm comfortable I don't expect to need to continue private nursing, but it would be nice. 

Oh, I do have a job I need to be able to do a decent job at so I can keep it. This is very important so we can keep our house & benefits (INSURANCE). Work has been really great & flexible with my situation so far. I'll be taking about 8 weeks off when she comes home. Hopefully that's enough time to get acclimated, streamline redundancies in all of the specialists we're getting set up with and figure out how to balance therapy & doctor appointments with work. I work with a lot of people on the West coast so my thinking now is early morning appointments and work something closer to PST hours?

I'm blessed to work from home but I'll need to start looking for a nanny, assuming we will not have private duty nursing covered. Mom has offered to stay as long as we need her, which is a fabulous offer and can take some of the pressure off on getting it all figured out before I go back to work... even though it will keep my folks from their usual return to Florida in early November. 

No word from the FDA. This means Monday is off the table for discharge. HHC needs a couple of days lead time to get Ella's Omegaven once approval has been received. I didn't expect it to be Monday all along. So we continue to wait. 

Sorry about the rambling post. That's what it's like to be inside my head today. C-R-A-Z-Y!!!

On a bright note, my neighbor installed Ella's car seat in my car today!

Sunday, September 2, 2012

A Walk Outside and Random Updates

This is a CB post.

We finally took our walk outside today! It didn't phase Ella, under her hat & sunglasses. It was definitely more for me, but it's nice to have her finally go outside for the first time... even when it was sticky with 93 percent humidity. We were only allowed to stay outside for 10 minutes, doctors orders. It was a private patio off of the L&D area of the hospital, not far from NICU. It was really nice of the doctors to allow this and the nurses to make it happen. 

Other tidbits...

My friend S came to visit yesterday and brought her good camera. She did Ella's first "unofficial" photo shoot. I'll share some of the pictures in future posts (tonight's picture is not one of them). I'm so happy with how they came out! Thanks S!!

Ella's eyes were checked Friday (they get checked weekly) and her ROP in her right (surgery) eye is gone! Yay!!! Her left eye (no surgery) is continuing to regress and is mostly stage 1 at this point. Yay!

I watched my 4th (weekly) dressing change of her central line, this time I videoed it. The early intervention coordinator suggested videoing anything I need to do at home that I might want to reference. What a great idea!

I expect it to be a busy week, after the holiday. Home Health Care (HHC) is coordinating the equipment and will train with the nurses here because the doctors want things done the hospital way. HHC will train me on the equipment, some time this week? I've not heard from them directly yet. 

I'll be "rooming in" with Ella next weekend at the hospital. They have parent rooms where we will stay and I will do all of her care... the key is needing the equipment & being trained on it by then. This will give me the opportunity to do her "home" nursing care myself while having the nurses close by. 

My parents are planning to come this weekend to stay with the dogs and visit with Ella. 

On Monday Dr R increased her feeds from 18 to 24, which surprised me... I think I covered that in my last post. Thursday he bumped her up to 30cc! A whole ounce!! Again, I was surprised because the other doctors kept talking about leaving her where she was to get her discharged with stable bowel activity. I'm happy with 30 for her. The docs are saying they will keep her at 30, a nice even number. She still let's out a brief cry when her bottle is gone, but after what she's been through I think she will do that with any amount.

Oh, Ella is now rolling from her tummy to her back! And she also rolls to either side from her back!! Today I watched her study her hands, it was too cute!

I think she's adjusting to sleeping on her back, but I'm not here all night. The first night, when I came in the next morning, the word "monster" was used to describe her... And I frequently hear her referred to as a princess. She's had some super fussy nights and some good nights. I'm hoping she's turning the corner. A few times recently I'll set her down awake on her back in her crib so I can do/get something and she does fine. 

Right now she's asleep on my chest.