3-Week Report

Lucy is 3 weeks old today and chugging right along!  She's up to 35 mls and they are increasing her feeds by 5 mls every 12 hours.  At this rate she'll be up to the target 60 mls in THREE DAYS!!!  She has been keeping her food down and pooping with the help of suppositories.  I think the doctors and nurses are a little surprised that we haven't encountered any major setbacks, especially with regard to the feeding, because it usually doesn't go this smoothly.  Lucy is earning a reputation for herself as a sweet, cute little girl who's tough as nails.  We are SO proud of her!

The surgeon is also happy with how the hole is healing.  They are back to changing the dressing every day now that the hole is getting smaller.  It started off being a few inches in diameter and now it's down to about an inch.  It's pretty amazing!  The surgeon also said that the hole is not what's keeping her in the NICU - it's just the feedings.  The hole doesn't need to be completely closed before we take her home, and we may even do the final dressing changes at home ourselves.  The only bummer is that her skin is getting irritated under the sticky part of the dressing.  It looks like she's inherited my sensitive, reactive skin.  So she has been a little grumpy after the past few dressing changes, probably because it stings her skin each time they take it off. 

Lucy is having no trouble regulating her body temperature so they moved her out of the isolette and into a big girl bed!  She is the only baby with a crib, and she has the primo spot in the back corner.  So she's pretty much Queen Bee of the NICU now. 

Lucy's new bed

We also spent a wonderful couple of days with Auntie Kate and Uncle Lee, who cruised up to San Francisco after their honeymoon!  They took some beautiful pictures of everyone's favorite new model.  Enjoy! 

Chow time

Sleep-burping

Pay no attention to the outgrown mani

Auntie Kate :)

Uncle Lee :)

Smitten!

I believe this is what the kids call "chillaxin"

Happy girl after a great visit!

   

Kangaroo Care

We've had a GREAT couple of days!  I'm afraid of saying this because I don't want to jinx anything, but it seems like the news just gets better and better each day.  Lucy is now up to 21 mls every 3 hours, and they're increasing her feeds by 12 mls each day.  We feed her with a small bottle now.  She needs to get up to about 60 mls per feeding in order to go home.  She hasn't thrown up since the very first feed.  They also started giving her daily suppositories to help her poop, and they're working!  She pooped yesterday and again this morning.  And she weighs SIX whole pounds now!  

The surgeon changed the dressing over her closure yesterday and was very happy with what she saw.  New skin is forming and the hole is shrinking.  So we're pretty much out of the woods as far as surgery is concerned.  The surgeon said she would be shocked if she needed surgery to close the hole at this point.  I also asked her how she thinks Lucy is progressing and she said she thinks she is progressing faster than average!  It was music to my ears!!!  Things are going so well and I can just feel that she'll be home soon.  All things considered, the past three weeks have gone by faster than I expected.  Even if we have another three weeks left, I finally feel like I'm seeing the light at the end of the tunnel.

And now for the best news of the day.  Because the opening is healing so nicely the surgeon said we don't have to keep her lying flat and still anymore.  So Lucy and I were able to do "kangaroo care," or skin-to-skin contact, for the first time.  I held her against my bare chest for a couple of hours, and it was absolutely amazing.  We hadn't been that close to each other since I was pregnant.  It was odd how familiar of a feeling it was to have curled up against me.  She slept through most of it, but a couple times she woke up and lifted her head looking for my breast. She's no dummy, and she knew there was something there that she wanted.  I was also surprised to see that she's already strong enough to lift her head!  Unfortunately I can't breastfeed her yet because they need to carefully control how much she's eating.  But eventually we'll get there, and hopefully this is a promising sign that she'll figure it out quickly.  Here are some pics of our best day yet. :)

Our first day of kangaroo care

 








 

Superstar Eater

Lucy is doing a great job with her feedings!  She started at 2 mls every 8 hours just 4 days ago, and now she's up to 12 mls every 3 hours.  She loooooooooves feeding time and slurps down her milk in seconds.  We feed her with a bottle nipple that we gradually pour milk into from a syringe.  I can't breastfeed yet because they need to measure out how much she is eating, but I am pumping and storing my milk for her to eat now and later.  She hasn't pooped yet, but the doctors said that will probably take a couple more days because she's not getting enough food to make a poop.  She is, however, farting up a storm, which is a great sign that the intestine is starting to function.  She has also gained weight since we started the feedings!  So far she's gained about half a pound and now weighs 5 lbs, 11 oz.  She looks so healthy and the doctors are really happy about the way the feedings are progressing.  We're trying not to get our hopes up too much, but things seem to be going really, really well!

The news on the closure is also looking better.  The surgeon checks the dressing every day to see if it is staying put.  Ideally they like to keep it on for 4-5 days before changing it because keeping it undisturbed allows the skin underneath to grow faster.  At the beginning they were having to change it every day because it was getting moist and wasn't staying in place.  That's why the surgeon wasn't totally happy with the way things were progressing.  But for the past 5 days or so it has looked great.  It's been dry, flush with the skin around the edges, and staying in place.  They are going to change the dressing tomorrow so hopefully we will know more about how the closure is looking after that. 

Lucy has seemed much more comfortable since we started feedings.  Who can blame her?  She's turning out to be such a sweet baby.  She doesn't cry very much and when she does it's usually not for long.  She smiles now and makes cute little noises.  I'm not sure if she realizes what she's doing but it's pretty adorable.  She is such a good sport considering everything that is being done to her.  Here are some recent pictures, including pics of her first cuddle with Grandpa Charlie.

Lucy and Grandpa Charlie.

   

Holding Grandpa Charlie's hand.

Rockin' the baby beanie.

Arms over head, a classic Lucy pose.

Lucy's best Yoda.

All Smiles :)

Lucy did well with her feeding from this morning, so she got another 3 mls this afternoon!  If she keeps that down they'll try another 4 mls tonight.  Here's what she thought about her 2nd feeding...

This should be illegal.

Also, Grandma and Grandpa are visiting and helping us out tremendously around the house.  Grandma got to hold Lucy for the first time today and Lucy loved every moment of it.  It was what I call a Good Lucy Day!

Grandma and Lucy

Okay.  THIS should be illegal.

Lucy Update

Time for a Lucy update!  Sorry I haven’t been the best blogger lately.  I was pretty exhausted after the wedding (which was wonderful!), and between NICU visits and pumping every 3 hours I haven’t gotten much rest.  Lucy is doing well.  As expected, we’ve made some progress and encountered some setbacks.  The green bile in her replogle tube cleared up enough for them to remove it.  So other than the PIC line in her arm she is now a tube-free baby!  They also started her feeds yesterday, which was a huge milestone.  They started by giving her 2 mls of milk through a pacifier with a hole in it.  She absolutely LOVED it.  She slurped it right up and opened her eyes wide.  She kept it down for a few hours but when we tried the next feed she vomited green bile, which means the milk is not moving through her stomach to her intestine yet (or at least, it’s not moving as quickly as it should be).  So they stopped feeds yesterday and resumed this morning with 3 mls.  So far she has kept it down.  They warned us that feeding is the longest, most frustrating part of the process, and that there are a lot of starts and stops.  So at least there’s nothing unusual about the way things are going.

There is also still the issue of closing the hole in her belly.  The sutureless closure isn’t progressing quite as well as they would like.  Lucy is a really strong and active baby and she strains and pushes a lot when she’s uncomfortable.  Her straining is causing the intestine to pop up a bit and the skin is having a hard time closing over the opening.  They are keeping a very close eye on it and trying to keep her as calm and still as possible, which can be hard at times because she is getting hungry and fussy.  As of now they still think that the sutureless closure will work, but there is a possibility that she could still need surgery to close the hole.  This would be a huge bummer because they would have to sedate her again and put the breathing tube back in.  We’re just taking it day-by-day based on what the surgeon sees.  She has been off the hard core pain meds for a few days, but today they started her on a mild sedative to keep her sleepy and still.  So far it seems to be working well.  

So, the next steps from here are to (1) continue feeding in the hopes that she’ll be able to consume a little more milk each time, and (2) keep her calm and still so that the hole can continue to heal.  

I know we’re all wondering when Lucy will come home.  I wish we knew the answer to that, but unfortunately we still won’t know for a while.  She has to be able to take an entire bottle and poop, and the hole has to close up a lot more.  The average stay for a gastro baby is 6 to 8 weeks.  The surgeon said Lucy’s case is progressing like an average case, and she doesn’t see any reason why Lucy would be out sooner or later than that.  Lucy is 2 weeks old today, so we’re hoping to have her home by early to mid-August.  

Our first peek at Lucy's face without any tubes!

She loves to have her hands up by her face.

Dad giving Lucy her first taste of milk.

A happy camper after her first feed.

A peek at the dressing over her closure.

My sister's beautiful wedding, which I was so blessed to be a part of!

Lucy's First Cuddle

So much good news today.  Lucy's breathing tube was removed this morning and she is breathing on her own like a champ!  She also had a big poop this morning!  With the breathing tube removed we were able to hold her for the first time and hear her cry for the first time since she was born.  I don't really have the words to describe how wonderful today was, so I'll let the pictures do the talking.  We're so incredibly happy.  Life is good. :)