One Month at Home

Friday marked ONE month at HOME for Ella!  

We continue to stay busy, every day.  I thought it might quiet down with fewer doctors appointments but not really.  I've actually spent much of the week on the phone with the doctors office (or trying to get them on the phone).  Let's just say that some doctors are juggling a lot of patients.  I leave messages that go unreturned.  I have to call the receptionist and insist she doesn't transfer me into voicemail (AGAIN).  I've also learned that I get results MUCH faster when I call the doctor-on-call on a Saturday than when I try to get a hold of the nurse during the week.

ELLA

Ella is doing great!  She's actually growing a little too fast at this point.  Her TPN is supposed to be reduced by 25%!!!   Of course there was a mix up in communication between the doctors office and infusion company so this change hasn't happened yet (because I wasn't involved trying to get it facilitated).  I had to talk to the on-call doctor today for another reason and it happened to be OUR doctor so I mentioned that Ella's TPN hadn't been adjusted yet - so she should have that handled (administratively) Monday.

For nearly a week her fussiness improved because her gassiness improved.  We started her on daily Immodium which helped a lot (for a while).  We were able to put her down during the day more frequently!  Grandma even said we had a 'different baby'.  When I mentioned not being able to put her down in my last post I had a lot of feedback about gadgets that might help.  We have the vibrating bouncy seat, the swing, the Ergo carrier, etc... we use all of that! With the exception of the carrier I consider being able to put her down in the bouncy seat, swing or anything where we are not holding/attached to Ella as successfully putting her down.

She did start getting gassy again mid-week.  Ella will have chronic problems with gassiness caused by a condition called Bacterial Overgrowth (BO).  This is due to Ella missing the valve between her colon and small intestine.  Bad bacteria in the colon are not supposed to make their way back into the small intestine but due to the missing valve (from her surgeries) the bacteria move into her small intestine and multiply causing gassiness, more frequent/looser/mucousy stools. 

I first called the doctors office when the symptoms started on Monday.  I talked to them Wednesday (after multiple calls) but it was focused on another necessary issue, getting Ella's bloodwork, we didn't get any feedback on her BO. By Thursday afternoon Ella was really fussy due to the BO.   Friday morning I called the doctor again.  It took 3 calls to finally get a call back(before the weekend and before the compounding pharmacy closed at 5pm for the weekend - the compounding pharmacy has to mix her antibiotic).  

ADMITTED

Wednesday we were admitted back to the hospital for the afternoon.  We needed bloodwork.  Her broviac (the line that is used to administer her TPN) also allows for blood to be drawn from it, it no longer was allowing blood draws.  It actually took about a week for me to get instruction from the doctors as to what to do to get blood drawn.  Wednesday morning it took over an hour of (MULTIPLE) phone calls with the doctors office & labs to TRY to track down our orders before I would take Ella to the hospital for bloodwork (we are on contact restriction, I didn't want to take her only to find out that the lab didn't have orders).  

Of course when we got to the hospital they didn't have our orders (after I was reassured by the doctors office that they just talked to them and they had the orders).  Thankfully by then I had a copy of the orders emailed to me so I was able to resolve that quickly.  

The Children's hospital area of the hospital attempted the draw through the line unsuccessfully.  We had to be admitted in order for the line team to work on her line.  It wasn't bad because they put us in a private room in the PICU and Ella slept for most of the day.  They tried several attempts using an anti-clotting medicine in her line but they were not successful.  This is not uncommon.  Apparently there can be a small flap that develops on the end of the line where pushing fluids through (such as her TPN) works fine but drawing blood out the 'flap' blocks the line.  

Since she can still get her TPN through the line I absolutely will not consider going back into the operating room to replace the line (and the surgeon agrees).  Unfortunately that means that for her bloodwork every 2 weeks we will have to go back to the Children's Hospital and she has to get STUCK.  This hurts mommy & Ella.

We got to the hospital before 11am Wednesday and got home just before 7pm... just trying to get a blood draw.  It was a long day.  BUT... it was ONLY for the day!!  

NURSING

I'm way behind updating you on our nursing adventures.  The home health company did confirm that I have coverage for over 100 nursing visits so I FINALLY had a nurse coming out nightly without the daily battle (and many more unreturned phone calls) to make that happen.  

Because of many frustrations with my nursing experience with our home health company, my pediatrician referred (at my request) me to another home health company.  I visited them on Monday to get a preview of their pump/priming process and ask some questions.  I liked them a lot but did not like their pump for various reasons (much less user friendly).  I was disappointed because I was hoping that making a change might solve my problems.  

I left that appointment thinking - why wasn't anyone from our infusion/home health company concerned about why I was having such a hard time learning to administer Ella's TPN.  Shouldn't they want to try and figure out the problem and resolve it?  Could it have anything to do with how I was trained?   On the way home I called our infusion company asking them to send out one of THEIR nurses (they subcontract nursing so my nurse works for a different agency) to REteach me how to administer Ella's TPN.  The fact that I had such problems priming the line - I had to be missing something, a simple trick...  

I also spent some time over the next day or so researching pumps, youtube videos of priming the line and asked my SBS Facebook group for tips & tricks.  Between my research, the new nurse and my sister (visiting) on Thursday we finally figured out the 'trick' to priming the line without aggravation or anxiety. The infusion company nurse did see first hand the problem I continued to have and I think, had I not received a lot of feedback from my research, would not have been able to help me resolve the issue.  

But we figured out that it is the angle you hold the filter during priming and the need to immediately clamp the line as soon as the line is filled (as not to allow the fluid to empty and air to backfill the line).   I'm amazed that this isn't taught first hand.  But I am happy to report that we have tested this theory Friday and Saturday nights with success (and without a nurse here to do it for me).  Tonight, from start to finish it was 25 minutes!!  That's all.  With no anxiety!  

So finally I am able to administer her TPN myself without problem and I can call off the daily nurse visits (that I had to fight to get).

OTHER

My sister flew in Thursday and my dad also came for the weekend.  We tackled a somewhat big project.  We swapped out my Living Room and Family Room.  

The Family Room was a very small space but were we seemed to spend most of our time.  The Living Room is a much larger space that was rarely used and has recently ended up a storage space for lots of baby gear.  I arranged for an A/V company to move the TV (mounted to the wall).  We moved the rugs & furniture and took the opportunity to CLEAN, especially all of those spots that are impossible to get to normally.  It was a much bigger project than I anticipated.  All of the big stuff is done now but the little stuff is still not back in place.  

My sister has helped a lot with the nursing aspects of Ella's care this weekend; she's graduating from Nursing School in December!  She has helped with the resolution of the TPN administration and also helped me change out Ella's Mickey (g-tube) button for the first time (again, thanks to youtube education).  

I still have a lot left to do and less than 4 weeks left of my leave.  I know I won't get to all of the "nice to have" projects but I still have a few "must have" projects that must be done. This week's priority is (MUST BE) preparing/scheduling interviews for part time nanny help for when I start work again.

Fly By Post

From CaringBridge

It's been too long but there is really no time to get online, let alone write up a post.  We are still working on Ella's need to be held during the day (all day).  We are able to get her down on her own for an hour or two every day, but other than that either Grandma or I are holding her, playing with her, trying to calm her.  This is NOT a bad problem to have... given EVERYTHING we have been through in the last six months.  Like I said in my last post, it just makes it hard to do anything other than the essentials.

ELLA

Ella is doing really well. As of Thursday she is 10lb 9 oz!! We moved to SIZE 2 diapers! She's a JOY!  She isn't perfect though... with the holding all of the time, late day/night fussiness she keeps us on our toes.  We admit that she is completely calling the shots in the house!  She is still (THANKFULLY) sleeping well at night.  It's just never fun to have to wake a finally sleeping, previously fussy baby every 3 hours around the clock.  Thankfully at night she tends to go right back to sleep!!  Let's keep it that way!!  If she's going to fuss, keep it during daylight hours!

Starting next week it looks like we are going into a phase of ONE doctor appointment a week!  We had 3 this week: eye doctor, pediatrician, GI doctor. Everyone is pleased with her progress!  We have graduated to seeing the eye doctor every-other week now!!  I asked the GI doctor how long Ella would have to be on the TPN (IV fluids), knowing that she can't give me a definite timeline.  She did say that based on how well Ella is doing that she would be off "sooner than you (I) expect"!  I still don't know what that means, but it made me happy!  

DAY TIME HELP

It's time to start interviewing help.  I do have an ad posted but have not had a chance to go through resumes and prepare myself for how I want to structure interviews.  Mom plans to stick around after I go to work but I told her that we will still need part-time help.  Given we have to feed Ella every 3 hours around the clock AND she needs to be held all day, that's too much for Grandma to do along with me working.  

For longer term help I am back to seriously considering an Au Pair program due to the cost savings compared to a full time Nanny.  An Au Pair is usually a young woman from another country who comes and lives with the family (us) and for a small salary provides 45 hours a week of child care.  Since the cheapest I believe I can get a full time Nanny would be TWICE what I budgeted for Day Care, the Au Pair comes in a good bit less than a domestic Nanny.  

ISOLATION

We are getting by on "Contact Restriction".  I do wake up every day and WISH we could get out and see friends, go places and do things with Ella.  BUT... it's not worth it!  For a baby as premature as Ella it takes the body/lungs/immune system up to TWO years to mature vs. a full term baby.  Germs people carry that they never know about, never make them ill, could send Ella back to the hospital - or worse.  Being home with Ella in isolation is a trillion times better than the alternative!  

We are taking walks, going on drives and trying to maintain contact with the outside world.  I have occasional appointments outside the house and mom had brunch with a friend who was in town this week.  My sister and father are coming to visit this weekend.  Besides the WELCOME extra hands it will also give Grandma and me an opportunity to get out.  I have my Supper Club on Thursday night, if all works out (we have some other things in the works) then hopefully I can meet my girlfriends out for a while.  I plan to send the family out one night over the weekend to give mom some time off.  

There's more to write about, but I need to relive Grandma from a fussy girl, this will have to do for now.  (Right now her fussiness is because she is gassy, which is unfortunately common for an SBS baby).

TWO Weeks at Home!

From CaringBridge.

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!!

NURSING

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.  

Sounds simple.

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.

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...

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.

***

THE DECISION

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.

THE PREP

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.

GOING HOME

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!

HOME NURSING

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.

THURSDAY

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.

FRIDAY

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.

MEALS/SUPPORT

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:  http://tinyurl.com/8v562d4

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

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.

Yeppers!

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!

Hectic

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!

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.

Rolling

This post is JUST FOR YOU!!

This morning our physical therapist brought us a MAT!!!  You may think, what's the big deal?  Well, part of my "I can't wait until Ella is home so we can..." list includes being able to put her on a blanket on the floor and play.  ...seems like such a simple thing, but of course in NICU the floors are hard and nasty, not a place for baby.

The other day, Ella was laying on my chest while I was sitting in the NICU recliner and I could tell that she was ready to roll from stomach to back, she just couldn't do it because I was sitting upright in the recliner.

Later I put her in her bed for tummy time.  I was a little hesitant to try it in her bed since the side was down, so I had to be very careful if she rolled - that I was there to catch her.  No worries about that after all.  She was so happy and comfortable being on her tummy in her crib (since she's no longer allowed to sleep that way, doctors orders), she laid her head down ready to sleep, rather than push herself up and reach for things.  That was the end of tummy time.

Tonight we used the mat for the first time.  We played and did exercises.  It completely changed the way we are able to interact!  I had so much fun!!! So did Ella!

In the middle of this amazing (first) time I was having with my daughter a woman walked up.  She was with another of the many service areas the hospital offers, she had been gone all summer and wanted to introduce herself.  She was from Chaplin services.  So she started talking, like many of the chaplins and chaplin volunteers I have met during our almost 5 months in NICU.    Did I mention that I put in a request at this hospital for the chaplins/religious volunteers to stop coming by?  While I was friendly with the ones in Asheville, the conversations are very awkward with the ones here... and I won't go in to the poor state of my faith these days... that's another huge post I don't know if I'll ever write!  But putting it out here, I feel like I'll have to write it now or it will be bad karma...

Anywho...

The woman keeps talking to me, asking me the "how I'm handling things" questions while I am completely diverted by Ella on the mat.  When it came time for tummy time, sure enough she rolled over!  Then she did it again!!  At this point I decide I have to try to capture it on video.  So she is there, talking, asking questions.  I am reaching behind me for my iPhone, swiping it on, going to my photo app and selecting video, all while keeping my eye on Ella (not paying attention to this lady).  

I captured this video (only 23 seconds), so cute!  It's so close up because I needed to be close enough to Ella to keep her from rolling off her mat.

Turn up your volume. You can hear the lady, she makes the last comment on the video.  A very bland sounding "that's hilarious", while I am giddy with laughter.

I used to have that bland sound in my voice... I love the giddy sound that Ella brings out!!

Car Seat Test

Another CaringBridge Update.

Last night I finally took Ella's car seat out of the box (I got it at my first shower in April).  This morning I took it to NICU.  While I was working today Ella had her car seat test.  This has been a 'right of passage' that has eluded us for so long.  We have watched so many babies hit this milestone over the last 20 weeks, but it was never our turn.  Today it was our turn.  Ella passed her test.

I wasn't worried about it.  She has been a breathing champion since June, except for that week after her second surgery.  Still, I'm glad she passed without issue!  I'm happy for anything we face without issue!!!

During rounds this morning, the doctors set a discharge date of September 10.  While it's nice to have a goal, I don't think the date is truly realistic.  The biggest obstacle is waiting on the FDA approval for the use of Omegaven as an outpatient.  It was confirmed today that the wheels are in motion.  It took close to a month to get her inpatient Omegaven approval.  I don't expect it to take that long, but I would be shocked if it was in place by the end of next week.

The wheels are also in motion for arranging home health care, equipment, parent education (that would be me, learning how to do all of this nursing care), etc.  I expect that to kick into high gear next week, if it is not deterred by the DNC which will be just down the road from the hospital next week (the city will be crazy, roads shut down, protesters, security check points, etc).  Hopefully people know how to skirt around the madness downtown so we can make some progress.

I will also have the opportunity to "room" with Ella before she comes home.  They have hospital rooms associated with NICU where she and I will be on our own, I'll be able to do her care, with a nurse close by.  That should help me gain my confidence as I start doing her sterile fluid changes daily and operating the pumps.

I'm still trying to fine tune other details while being effective at work.  I need to get a lot done from a work perspective so I don't leave things a mess as I take additional time off 

Oh, and the doctor has now ordered that Ella sleep in her crib like all other babies... with no blankets, on her back.  The little one loves to sleep on her tummy so I feel bad for her nurse tonight, as she is forced to break that habit.  I did leave her swaddled on her back, I hope she adjusts well, for the nurses sake!

The H Word (Again)

Another CB Post

It was an interesting week.  Grandma was wonderful to come spend days with Ella while I worked.  She kept me up to date on what was happening, as Ella has a busy schedule in NICU most days.  

Thursday Ella had a colonoscopy to investigate the source of the bleeding (the last that we had seen was Tuesday AM).  The procedure was scheduled sometime between 12:30 - 1:30 (depending on who I talked to) but I had been told the GI doctor runs early. I cleared my schedule so I could be there to talk with the doctor.  Shortly before 8:30am Thursday, just before rounds made it to us, the GI doctor shows up.  I had assumed he was rounding himself but no, he was ready to do the procedure!  Talk about early! 

Her colon looked good.  Pathology reports came back and everything looked fine.  This is great news but it doesn't give us answers.  How do we get out of this cycle of feeding/not feeding/feeding/not feeding?  Not feeding a hungry baby for days at a time is not pleasant for anyone. 

So, Ella started back up at 18ml/3hrs (this is just over 1/2 ounce) on Thursday afternoon and has been doing well with it.  She fusses briefly when she finishes because she want's more.  But she is generally happier and sleeping better.  When Grandma got here Tuesday afternoon, she said "what fussy baby"?

Well the doctors are using the H word again.  Home.  They just started talking about it yesterday.  The plan is to send her home on the TPN (IV fluids) and for us to work with the GI specialist as an outpatient on balancing out her feedings.  I'm happy with this plan.  However it does sound like it will be a few weeks before she'll be able to come home, because apparently we have to reapply for FDA approval for the use of Omegaven (which we already have FDA approval on as an inpatient) as an outpatient.  Who knew?  They said they would get the paperwork started Monday.

Since it will still be a few weeks before she comes home (if ALL goes RIGHT), I am pushing for working on increasing her feeding amount, in a careful manner.  The doctor on yesterday (very conservative about her feeding amounts) is not open to increasing her feedings.  He asked me why I wanted to increase them?  Um... she's hungry.  The goal is to increase her feedings and reduce her TPN which is both sustaining her but also poisoning her.    

There's really no obvious answer about her feedings.  I wish there was.  I just don't want to sit tight for the next few weeks until we are discharged to keep trying.  

I know it sounds like I'm always pushing back but it's not like that.  I inquire and request discussion and consideration to my concerns.  I do get frustrated but that usually boils down to a lack of control over things, frustration is natural - especially in someone who always likes to have a plan.  I have let the breast milk issue go at this time, even though the GI doctor told me this afternoon that it would be fine to start her oral care with breast milk back up because they would have seen evidence of an allergy in the colonoscopy results if that was a problem.

I have a lot to learn about and put in place to get her home.  There is only one local home health care agency that works with the Omegaven.  I have to figure out whether we will still have Medicade coverage or whether it ends when we leave NICU.  I know my own insurance pays for "skill" visits from home health care (specific purpose for visits) while my nurses tell me I'll need private nursing at home for a while, and that Medicade should cover it.  There will be medical equipment necessary (and the way my mind works, I think about what happens in the event of a power outage?), fluids that will need to be changed daily (how do I store it, how frequently do I receive a shipment/delivery?) and of course, learning how it all works.  It's a lot to learn, my new nursing education, but I'm ready.

I've also accepted that once we are home, we will likely be in and out of the hospital for a while.  Babies with SBS at home on TPN rarely go home and stay home.  The most common reason for readmittance is infection (due to the central line for her TPN).  AND, we are going to be going home as RSV season begins, another big reason for hospitalization of preemies (micropreemies).  I discussed this with the nurses and this basically means isolation, which I already expected.  We can handle it.  It will just be difficult to keep from introducing her to everyone who wants to meet her.  In a perfect world we'd be out socializing and on play dates.  But being HOME together will be more than good enough!

We didn't get to go for our little walk outside this weekend.  I was prepared with everything we needed today (finally) but three nurses were unexpectedly out sick leaving them short handed.  Maybe next weekend. We had a nice time hanging out together this weekend indoors.