Feb 27 2014

09-52 playing doctor

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

Week 9: playing doctor

5.5 months old

On Sunday morning we were surprised to hear that if Lucy had no problems that day we would be discharged on Monday morning, not even 5 days after surgery! With all our experience in hospitals, we were expecting to be there for at least a week, maybe more!  They had told us recovery time in hospital was a week and in the past we’ve learned to expect that it takes longer than what they say, but in this case I guess she was right on track!  Apparently recovery from this surgery is surprisingly easy because there is no muscle to cut through.  She was sent home on tylenol as needed (well, along with a barrage of other medication that is heart related, but she will only be on that for a week or so).

We were trained how to clean her incision and watch for signs of infection, as well as watching for signs of problems with the heart itself.  Lucy never seems to mind having her dressings changed and incision cleaned because it means laying on her change table, which is her happy place.

The feeding issue has become more and more of a burden/disappointment/frustration.  We were told that immediately following the surgery she’s likely have a day of great eating (because she had been fasting the day before surgery) but she would probably go back to her old ways within a few days.  We really hoped that they’d be wrong…but…alas.  Part of the problem initially (we think) is that being intubated really irritated her throat.  She would cry whenever she swallowed and her voice was very hoarse.  She wouldn’t even let us put a soother in her mouth.

Starting Monday we are making an attempt to wean her from the tube.  The doctors and nurses and occupational therapists all agree that she hasn’t ever really had the chance to feel hungry, since from day one she’s been on a very regimented schedule.  We don’t really know what to expect, and honestly I’m not very hopeful that anything is going to work but we have to try something.  I refuse to celebrate her 1st birthday with a tube in her nose.  I don’t even want to celebrate her 6 month birthday with a tube in her nose (that’s in 2 weeks, by the way…)  At least now that the surgery is out of the way we don’t have to worry about calories as much.

7 comments


Feb 21 2014

08-52 her whole heart

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

Week 8: her whole heart

5 months old

Weight: 12lbs 10oz

There’s no fancy lighting in this photo. The background is fairly ho-hum, and Lucy isn’t doing anything particularly expressive/funny or interesting.

But.

This is the face of a little girl whose tiny broken heart was stitched back together by miracle workers.

Wednesday night, after a long day of pre-admin surgery tests, we went back to our hotel and had a lovely evening together. Lucy was in a great mood; Dave even got to hear her laugh for the first time! She also slept from 8PM to 5:30AM (when we eventually woke her) and hadn’t fussed at all in the night. She was her usual cheerful self all morning (and all she wanted to do was jump up and down) until the nurses swaddled her in a warm blanket after giving her a sedative (to help her fall asleep they said! ha! If they only knew how *not* cuddly Lucy is…)
Eventually the sedative kicked in and I had a cuddly baby for 2 minutes until a nurse came and took her for surgery.
She went into surgery at 8AM and 3.5 hours later our hospital pager went off to let us know she was done and then it took another 1.5 hours before we could see her.
The surgery went really well. They found another small hole between the left and right atriums (an ASD) that was also repaired along with her VSD. She has been transferred from ICU earlier than expected and while she is still uncomfortable and sad, all her vitals are very good for 1 day post op.
She has been doing really well with oral feeds tody, although this is very normal for a heart baby immediately after surgery and it usually slows down after a day or so. We’re really hoping that the NG tube won’t be in for long, but the cardiologists have all told us that it may take time.
We expect to be here till mid next week if all goes well.
Until then, it’s a hospital cot and long days and nights here.

5 comments


Feb 14 2014

07-52 daddy’s girl.

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

Week 7…Daddy’s girl

21 weeks, 4 days.

Weight: 12lbs 3oz

I had a lot of pictures in the running for this week…but this one…this was the one.  I think it’s safe to say that she has officially got him wrapped around her tiny little finger.

You guys…we have 6 more days till surgery.  Yesterday we met with her cardiologist one last time to go over details of the stay.  The nurse dealing with her gave us a very good prognosis for afterwards in terms of her feeding improving significantly afterwards.  This is, of course, not our first rodeo when if comes to medical procedures with our baby so we’re not getting our hopes up that things will be great right away.  But there’s hope.

The next time you see this little face she will have a whole heart again.  How exciting is that?

 

6 comments


Feb 5 2014

bits & pieces – baby edition.

I haven’t done one of these for a while, so I figured it was about time.  I’ve been asked a lot lately what my day looks like with Lucy…I guess because she is on an NG tube, or maybe because of her heart condition.  Either way, I’m not sure it’s too different from another new mom–except that we are on a pretty regulated schedule.  My day is broken up in 3 hour segments now (with me having 2 hours to get something done, if/when Lucy sleeps).  We were feeding every three hours round the clock up until last week when we cut out the 2AM feed and boosted the rest of her amounts.  She does tire quickly and probably sleeps more than most 4.5 month old babies, but it’s small cat naps throughout the day.

So without further ado…here’s a typical day.

In the words of Molly Johnson (10 points if you know who that is) “Well…good morning!”  Forgive the crappy picture.  I dare you to take a good picture 2minutes and 31 seconds after you’ve been woken up at almost 5AM.

At least someone is in a good mood at 5AM.  Always big smiles from this one in the wee hours of the morning.

Minnie doesn’t ever beg for food.  We’ve never fed her scraps so she has no idea what she’s missing.  Bigsby, on the other hand, knows all too well.  He begs for bits of my breakfast muffin.  Every morning.

If I want her to fall asleep and she’s being fussy, I usually put her on the play mat…she plays so hard that she’s asleep within minutes.  It’s one of her favourite places.

Perching pug.

Early morning bread batch.

“I fell asleep on my play mat and woke up in my crib!  WHAT’S GOING ON?!”

Lucy always dresses her best, even if she’s got no place to go.

She’s 4.5 months and already tired of me taking her picture.

I’m pretty good with the emoticons, right?

Bread for the week.

It may not look like much to you, but Lucy had half an ounce at that particular feed.  The next feed she did 1.5oz which we were all very happy about.  We are trying to reinforce positive oral feed times…it’s not easy.

The lamp works well as a feed bag hanger.

Lately my one luxury a week has been painting my nails.  I never used to paint my nails (unless I had an occasion) and since Lucy has been born my nail polish collection has gone from 2 colours to many colours.  Exciting, I know.

I can’t have a bits and pieces blog post without Bigsby.  Even though all he does is this.  Sleep on the bed.  All day.

Helping me with the laundry.

“Minnie, bow your head.  Say your prayers.”  Our puppy is a Christian.  She prays before every meal, and only eats when you say “Amen”.

Experimenting with tricking her into eating orally.  She did a half ounce this way, but then the next feed totally caught on and refused that particular soother.

I made a bunch of lasagnas to freeze and save for a rainy day.  Dave couldn’t wait for a rainy day and insisted on having it right away.

My bedtime routine is this: Pajamas, Pug, Port & Pinterest.  In bed by 9PM.

Rinse & repeat the next day all over again.

1 comment


Feb 4 2014

06-52 express!

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

Week 6…Express!

20 weeks, 2 days.

This week: She has been so expressive and attentive lately.  She’s such a people watcher and whenever we go out people comment on how she watches everything. Lucy has also been *determined* to roll onto her stomach.  She has done it twice.  The second time she got so mad that she was on her stomach that she rolled back onto her back.  Apparently these are things that tiny babies like her aren’t supposed to do.  She likes to keep us all on our toes though.

This week we have NO doctors appointments and are taking it all in.  I’m taking all my spare time to cook big batches of food so that when she’s in the hospital we won’t have to think about cooking too much.  We’ve also decided to become hermits for the next two weeks because we can’t risk anyone getting sick and passing it off to Lucy and jeopardizing the surgery.

Speaking of surgery…15 days left.  We can do this.

And one more picture…just because seriously…can we talk about how cute her blonde, blonde eyebrows are?

2 comments