Jan 29 2014

05-52 – hands free

Project 52 – A portrait of my child once a week, every week in 2014.

Week 5…Hands free

19 weeks, 2 days.

11lbs 5oz (!!!)

This week:

…has been a gong show.  And when we finally had some free time on Monday evening…Lucy pulled out her NG tube and we had to go to the hospital to get it put back in.  Now she has to wear mitts all the time.  I let her have her hands free for a bit every day and the first thing she does is put her hands in her mouth.  She LOVES her hands.  (see above!) She does HATE tummy time, and this particular time ended in tears…and vomit (she just had her shots though and they have made her pukey)

We have 5 appointments this week.  One with Lucy’s GP, one set of 4 month shots, one set of RSV immune booster shots, a meeting with an OT and child development team, and on Friday a swallow study (not looking forward to that one…)

Her weight gain has been really stellar and we were pretty excited to see that she is now officially over doubled her birth weight (5lb3oz)  Because of that we wanted to see if we could cut out the 2AM feed and let her sleep till 5AM, and she has!  Huzzah!

3 more weeks till surgery.  I’m white knuckling it till then.

(and one bonus picture because, well…she’s flippin’ cute.)

 

3 comments


Jan 22 2014

04-52 sleeping easy.

Project 52 – A portrait of my child once a week, every week in 2014.

Week 4…Sleeping easy.

18 weeks, 2 days. (I don’t know why I’m still counting in weeks…I guess it’s cause she still looks so little.)

10lbs 12oz

This week:

A lot has happened.  Most importantly, we finally have a surgery date for her heart surgery and it’s sooner than we thought which is such a relief.  Initially they told us early spring, and the though of doing this NG feed thing for that long (because she will need it after her surgery too) was overwhelming.  Now, with her surgery being Feb 20th, there is actually an end in sight to this madness.  We are aware that she will not suddenly be better at eating, but it’s a step in the right direction as she will have much more energy and hopefully the desire will come with that energy.

We’ve all been sleeping a little easier knowing that the end is nearer.

29 days till surgery.  Not that I’m counting…

11 comments


Jan 21 2014

BUMP

I never really got to finish my bump chart that I started with Lucy since she was born early and we spent so much time in the hospital.  I had plans to have the same picture of me holding her just after she was born, but…well…that never happened.  The last bump picture was taken actually at 33 weeks, so it was a week before she was born.  It was in the last month that I was completely miserable and totally unaware of the reason why I felt so uncomfortable and was so huge despite not being full term.

I figured I’d make the most of the pictures that I already took and at least add some pictures of Lucy at the points where she would have still been documented had she been in my belly. :)

1 comment


Jan 16 2014

03-52 change

Project 52 – A portrait of my child once a week, every week in 2014.

Week 3…Change.

17 weeks, 3 days.

10lbs 3oz

This week she: Just started teething and is fascinated by her hands.

It’s obvious by the picture that we are finally home now.  We were discharged yesterday afternoon with all the gear we needed to feed Lucy via the cursed NG tube.  Can I just take this time to say how much I hate this tube?  It’s so ugly and gets in the way of everything.  She is constantly trying to get it out (see her hand in the picture?  She pretends to chew on her fist, and then works her hand up to the tube to pull at it).  I’m afraid that any time I go out in public it’s going to be the first thing someone sees when they look at her, and consequently I will have to answer a barrage of questions about “Why is there a tube in her nose?”  when I’d rather hear “Does she laugh a lot?” or “Look at her pretty eyes!” or “What a cute smile!”

It was the bane of our existence when she was first in the hospital after she was born.  A big fear of mine was that she would have to be back on it for her heart surgery…I just had no idea that it would end up being in her nose again 2 months before her surgery.

So anyway, during our 12 days at the hospital they figured out the following:

Yep.

Basically there’s no obvious reason why Lucy won’t eat.  What they thought initially (complications from her duodenal atresia surgery) was wrong.  The doctors are speculating that it’s probably a perfect storm of all her issues, in addition to catching a cold in December that has pushed her into this aversion.  She is doing a swallow study at the end of the month, but the feeding specialist said she didn’t expect to see anything wrong (they are just covering all the tests possible to rule anything out).  We know that she is capable of eating as she did an entire month and a half of meeting her requirements after initial discharge.  The challenge now it’s getting past the fear that she has of the bottle.  How the heck to you tell a 4 month old that this thing we are putting in her mouth is for the best?!?!

Some people have commented that it must be nice having the tube back in because it takes the pressure off of feeding her since the doctors want her to be a certain size for heart surgery.  Sorry.  It’s not nice.  I’ll take her being a baby that eats well and gains slow to her being a baby that is tube fed any day.

PS: And another thing…why the heck do they make the long term tubes YELLOW?!  All the tubes that are 3 day tubes are clear.  If you knew that a tube was supposed to be in for a longer amount of time, wouldn’t you want to make it less conspicuous?

18 comments


Jan 7 2014

02-52 the hospital stay

16 weeks + 1 day.

I have to admit, this photo isn’t exactly the kind of photo I envisioned I would be sharing this week.  I even debated whether or not I wanted to share it.  I remembered though when Lucy was in the thick of her almost 7 week stay at BC Children’s hospital that I took almost no pictures.  All I have are crappy cell phone pictures of the first 7 weeks of her life (with the exception of her birth photos).  A nurse reminded me that this was just part of Lucy’s story whether I liked it or not.  So here it is.

Last Friday I mentioned that I had spent much of my day on the phone talking to Lucy’s specialists about what to do about her feeding issues.  Her occupational therapist suggested to me that if her eating got to the point of being alarmingly bad, we would need to get an NG (nasogastric feeding tube)  put back in.  Saturday came and she barely at anything all morning, so Dave and I admitted defeat and went to emergency, since her paediatricians office was closed.  Seven hours later, they admitted us into the paediatric unit and we are now playing the waiting game till Thursday when we meet with her surgeon (from the duodenal atresia surgery) and cardiologist from BC Children’s Hospital to get the official prognosis.  From what her paediatrician can surmise the spot in her intestines where they operated on has likely contracted when healing causing a narrowing.  This explains a lot of things: 1, Why she never seems hungry (because her stomach drains very slowly) 2. Why she screamed all the time when we tried to feed her, (because this was causing bad silent reflux which burnt her esophagus), and 3, why she always seemed phlegmy all the time (because the contents of her stomach were always coming up).  We have a general idea of our options, but it is ultimately up to the surgeon as to what will be best.  We don’t even know if this is what’s wrong–our hospital is holding off tests because as soon as she is sent to the Children’s hospital on Thursday they would just repeat everything regardless of what our hospital did.  Right now Lucy is on a slow continuous feed (an ounce an hour) so that it is easy on her stomach.  On the plus side, since she is not doing any work to eat and is getting all the calories she needs she gained 8oz in 2 days!  She now is 9lbs 10oz.  We will have a ten pound baby before we know it!

Dave and I are pretty relieved, surprisingly, at this point.  Her feeding was wearing us out and it seemed like there was no solution.  At least now there is some kind of answer and a possible fix for what has been going on.  We have our fingers and toes crossed that this will be able to be fixed and we can go on with life…until her heart surgery that is, when we will have more hospital stays.

PS: She might have to have an NG tube in for an extended period of time and we may have to go home with a pump so she will be fed continuously.  This means that I will likely not want to make too many outings because it will mean hauling around a baby with a pump attached to her.  No offence, but you may not see me in public for a while if this happens.  I’ll be glad to have visitors though.

3 comments