Thursday, August 30, 2012


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...


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!!

Wednesday, August 29, 2012

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!

Sunday, August 26, 2012

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.

Tuesday, August 21, 2012

Out of Balance

Another CB update.

I shouldn't have written the last post but I was so appreciative of a good week...

Sunday Ella turned into a true fusspot. We couldn't figure out if she was inconsolable due to hunger or gas. Later we realized its hunger. She just gets a small fraction of what babies her size eat and she's naturally hungry. The iv fluids just don't cure the hunger. It's so hard to watch her fuss constantly because she's hungry and do nothing about it. Or worse, take what little she gets away. 

Yesterday while I worked the nurses took turns holding Ella because that was the only thing that halfway worked to console her. They are very full and don't have the staff for catering to one fussy baby. 

She didn't sleep during the day at all on Sunday or Monday. 

Of course yesterday she was off feeds for several hours due to more blood in her diaper. I found it at 7am. It was just two small streaks and it wasn't mixed in with her stool. They stopped her feeds, ordered an X-ray and labs and everything checked out fine. They attributed it to a fisher on her butt and restarted feeds at 18ml. 

This morning at 3 am, more blood in her diaper. Stopped feeds again. More labs that look fine. Thorough butt exam didn't show any evidence of a fisher. 

Basically, no idea what is causing the blood. She's off feeds for a couple of days and when she does restart it will be little & slow again, because that's how it works. 

At 7am I asked my mom to come so she can hold her during the day while I work. 

It's a very delicate balance, that works when things are okay, working with Ella in NICU. When these issues happen, the balance is completely thrown off. Thankfully mom is so willing to drop everything and be here when called. She should be here before noon.

A Good Week

Oops!  I wrote this on CB Saturday and forgot to cross-post it.  It's a bit out of date now as E turned into a fusspot Sunday, and it continues.  And we had a scare with blood in her diaper yesterday, but it's been ruled to be from a "fisher".  My fussy baby stays up ALL day, demands to be held - which doesn't even always sooth her - requiring the NICU nurses to tag team holding her throughout the day.  We believe she is simply hungry... wish that were as easy to fix as it sounds....

We had a good week.  She came through the surgery "as expected", which is a refreshing change for us!  She was off the ventilator 10 minutes after getting back to NICU and feeding shortly after that.  They moved her back to Special Care, from the Intensive side of NICU (where she had to be due to surgery) that night.  

She has been happy, eating and sleeping all week.  As of yesterday she's up to 6lb 6oz.  

(Sorry Mom, have not shared this story with you yet) Last night, the nurse and I were both unsure when looking at her poopy diaper whether we saw a tinge of red, or if it was the lighting?  She ended up sending a sample to the lab so I waited with Ella for the results.  After her 11pm bottle, the results were finally in, negative, no blood in her stool!  YEA!  It feels so good to get good news!!  

Ella has had a couple of special out of town visitors over the last couple of days.  

CA moved away a few years ago, got married and has a 3 month old little boy.  She came and visited Ella last night and I went to meet her little boy this morning.  He's 12lb!  To me, he was HUGE!  Back before Ella was born, CA and I were planning to get the babies together when she visited this week... but we made it work so we were able to meet each others little ones.  

BFF, the one who flew to Asheville the day Ella was born, came to town today.  She had not seen Ella since she was 3 days old.  She has enjoyed getting to cuddle with her, and I've enjoyed catching up!

I was informed this week that, with doctor's permission, I should be able to take Ella out on the patio near NICU to get some secluded fresh air.  Ella has never been outside.  I'm so excited about this!  But I learned that I need baby sunglasses and a stroller in order to do this, neither of which I have (yet).  This weekend has been too busy to have time to get to Target, so it may have to hold until next weekend.  But how exciting!

Monday, August 13, 2012

ROP Surgery

Long day but Ella got through her ROP surgery well.  It didn't happen until 4pm but it only lasted about 45 minutes.  Everyone was so kind and made special efforts for Ella.  I did good until they brought the ventilator and transport isolette over, then it got real and the anxiety set in.  But actually, I handled this surgery much better than the previous two.  So did Ella.

She is off the ventilator!  They have her on a low flow cannula, barely.  

They resumed her feeds at 8:30pm (her last feed today was 4:30am, hungry girl).  She was happy to eat again but her throat must be sore from the intubation because she didn't take it all at once like usual.  

She should sleep well tonight.

I am home, fed the dogs, fed myself. Meeting with the GI doctor at Ella's bedside at 8am tomorrow!!

Thank you for all of your prayers and positive energy!  Good night! 

Sunday, August 12, 2012

The Digestive System

I decided today that I will begin copying my CaringBridge posts over to this blog to begin to get me reconnected with everyone here (and thanks to everyone here who visits CB too). As I am able, I'll add additional color/commentary - my thoughts and feelings, along with the basic facts that I post on CB.  I know this was suggested early on, when I was too overwhelmed to think straight.  I think I'm up for this plan now.  However, I need to get to bed... it's going to be a long day tomorrow and 5:15am will come early!

Today's CB Post 

Dr. M sat down with me today and drew me a map of the digestive system, explaining the various parts of the small & large intestines and what each part was responsible for. She then went over what Ella had lost and what she has left and discussed the challenges specific to Ella based on what she is missing.  She covered both our short term and potential long term issues.  

It was a very satisfying (educationally) conversation yet difficult at times to listen to.  The hardest part to hear was that she expected it to be months before her feeding issues are balanced well enough to go home.  I'm still processing this tidbit.

She has also left a few messages for the GI doctor who has not called me yet in response, as requested.  I'm hoping the GI doctor is just out of town or something, to explain her lack of response.  We'll see.  We have another distraction ahead of us tomorrow.

Mom & Dad came for the weekend and we had a nice time.  They really enjoy spending time with Ella, I love that!  We had a belated birthday dinner and did some more tweaks to the nursery.  I'm happy to report that Ella's room is basically complete, with the exception of some last minute tasks, like putting the diapers, wipes, etc in place.  

Ella is continuing to do well.  Her feeds were doubled on Saturday to 18cc, which is good because she was really hungry... the nurses this weekend pushed for an increase because they could see how hungry Ella was, particularly Ella's other primary, Nurse Pam.   She's very happy with her 18cc/3hr and is also getting oral care with breast milk (a little by by mouth).  

Tomorrow is her ROP surgery.  It is expected to be around 2 - 3pm tomorrow (probably closer to 3pm).  Thankfully Nurse Tammy will be back to help her through surgery and recovery.  I'm feeling alright about her surgery so far although I expect anxiety will kick in by morning.  

I know that everyone following along will be praying for Ella to have a good surgery and an easy recovery.  Thank you for that!

Have I mentioned that Ella hit 6 lbs on Thursday (actually 6.1), her 4 month birthday?  FIVE TIMES her birth weight (and still smaller than most full term babies)!  As of today she's 6.2.

Thursday, August 9, 2012

I Miss This Blog

Hi everyone.  I'm just stopping in to say how much I miss this blog.  I've had so many posts in my head that I never have the time to actually write.  And I do censor what I write on CaringBridge (link posted on the right side bar)... because if I'm too real, it starts a telephone/email panic chain between friends of my parents, to my parents, to me and everyone is freaking out.  So it's easier to be clinical on CaringBridge than to be real.  That sucks, but the audience is too broad, so that's just how it is.

I know I can be real here... I just don't have the luxury of time to write out my feelings as they are happening.  Especially since going back to work.  This is where I would rather be writing, but it benefits me to write for the majority on CaringBridge right now, keeping everyone informed, and keeping my space here quiet/secret.

I'm reading your blogs still, but rarely commenting.  And almost never commenting if you have captcha (hate that impossible to read thing)... please accept my apologies.  My world is very self centered right now and unfortunately I have to be that way for Ella.

Please don't give up on me here... I promise, my intentions are to come back whenever life returns to some form of 'new' normalcy.  Thank you!

Ella is 4 months old today!