Trick-or-Treat!

Ella dressed up in her Bumble Bee outfit for our trip to see her GI doctor this morning.  It was short-lived as the nurse needed her weight & measurement (naked baby) and we didn't bother putting her costume back on over her PJ's.  

After her afternoon nap we tried it again for a photo opportunity.  She doesn't really care about dressing up.  She is NOT a camera ham as of yet.  Usually when a camera is pulled out, she looks the other way or starts squirming/fussing.

Last Halloween I was in Colorado on bed rest as I had my embryo transfer (resulting in Ella) that day. That makes Halloween a special day for me!  Tonight she is asleep in her crib!

The GI doctor was thrilled with her lab results!  For those who know what it means, her Direct Bili is now 0.2 (normal), Total Bili 0.4!  At it's highest her Direct Bili was 11+. Her Bili is the reason we were on the Omegaven, and waiting for the FDA approval to use it at home... that never came.  Instead, since she was eating enough orally we were able to take her off Lipids (what the Omegaven replaces) completely.  

After 3 weeks at 50ml/3hr we increased to 53ml today.  Starting next week we are to increase by 3ml every Monday & Thursday.  This should take us places!  The doctor said that she would consider another TPN reduction in 2 weeks.  

I had a good interview with a potential part time nanny today and have another scheduled for tomorrow.  I'm feeling better, pending references & background checks, that I'll have the proper help in place to return to work in 2 weeks!  And even though this/these caregivers will be short-term, they will also be able to fill in as-needed after our Au Pair gets here too.  

We are almost through 350 pieces of candy tonight, giving 2 out to each child.  Grandma & I did have a few pieces/set some aside.  

Progress

Another CaringBridge post.

We have made a lot of progress since my last post!  

Ella

Ella's TPN was finally reduced by 25% last Wednesday!  We did not get a reduction in hours, she is still getting her fluids for 20 hours but at a lesser volume.  Our fluid bag is a lot smaller too! This means her backpack is lighter!  Not that her backpack is heavy... but when you are carrying a 12lb baby (yes, she is now 12lb 2.5oz) and have to carry a backpack with fluid and a pump, you can tell the difference when they cut back by 150ml.

We are enjoying 1 doctor appointment a week (this week we see the GI doctor on Halloween) and our PT/OT at home each week.  Nurse J comes every Sunday afternoon to change Ella's central line dressing.  Unfortunately after PT tomorrow morning we have to go to the hospital for labs.

Child Care

I am so excited that I found an excellent Au Pair!  When I first went down the path of considering an Au Pair I had a 'wish list' in my head of everything I wanted in someone who would come live in my home and take care of Ella.  I was sure I would have to compromise and settle for 'good enough'.  We are classified as 'Special Needs' with the agency which means only prospective Au Pairs who indicate they are comfortable working with Special Needs children can be available for us to interview/hire.  This is a tiny pool of candidates.  Over about 3 weeks of looking I saw less than 5 profiles!

I had poor interview with a candidate from Brazil on Wednesday afternoon, due to technology issues (international interviews via Skype are tricky).  The next day the profile for N shows up as a candidate and I couldn't believe what I saw!

N (I will wait to share her name once she gets here and gives me permission) is from South Africa.  Her native language is English (this is a huge plus, very hard to come by)!  She is in her early 20's and graduating from college next month.  She has years of childcare experience/training, including infants and special needs.  She is mature and responsible.  She still lives at home with her family and wants to have an adventure, gain independence, before going home and working on her Masters degree. I found someone who meets my 'wish list'.  She said that she immediately connected with us and knew we were the right match for her (she was interviewing with another family as well). As long as all of the paperwork (Visa) is processed timely she will be here mid December.  We are so excited to have her come spend a year with us!

This week I have in-person interviews for Part Time Nanny support to help us out until N arrives and settles in.

Nursing

Hanging Ella's fluids every night is still going really well.  I can still get it done in less than 30 minutes now that I have figured out the technique that works consistently to prime the line.  

I just realized that the next set of bottles need to be filled before our 9pm feeding.  Must go!

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.