Doctor Visit: GI

I thought Seraph's cardiologist trumped everyone else.  I was wrong!  Seraph's Gastrointestinal (GI) doctor says Seraph is on a good track for her weight and height gain and that she won't be 30 lbs by May.  Cardiologist wanted her to be 30 lbs in May for her next surgery.  I guess the surgery will be later.
I also learned that Seraph's stomach empties very slowly.  This is why she's been having trouble with the last 3rd of her feed.  I need to feed her (thru the g-tube) over 40-45 minutes. I told the doctor straight up that it's just not going to happen.  We agreed to a modified feed where I do 1/3 of the feed and then go do something else for 20 minutes and then repeat until her feed is done.
I thought she'd be happier on this schedule, but she HATES being bugged so many times.  I have high hopes that she'll get used to it.
The doctor also asked me if she'd been vomiting.  No. I asked him if vomiting was common in cardiac kids and he said yes.  He didn't know why - mumbled something about organs not getting enough oxygen for extended periods of time. He wants to see her again in 4 months.
It's still kinda funny to me that we're hoping Seraph will *become* a picky eater.

Dinner Music

I was sooooo busy playing card games that I asked my Sexy Haqon to please feed Seraph for me.  When I looked over to see how it was going, she'd gathered a HUGE group of cousins (and an Auntie) to sing to her while Daddy filled up her tummy.
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I was brushing the tangles out of Angel's hair this morning when.....
Strong Bear:  "Mom, you need to stop now.  Her hair is pretty enough.  You're done."
Angel gladly scooted away and showed off her beautiful do.

Why G-tubes are better than NJ-tubes

Seraph has a G-tube for food and meds.  She has lots of oral aversions and doesn't eat orally yet.  You can read about her G-tube here.

Before her G-Tube, Seraph had an NJ-tube which is a tube inserted through the nose and threaded down to the tummy. (NG-tube is to the tummy, NJ-tube is threaded all the way down to the small intestine.  This must be placed under floroscopy at the hospital)

Many preemies have an NG-tube.  It's fine when they're tiny.  But as they get better at grabbing things, they're always taking it out.

When the doctors started talking about a g-tube for Seraph, I searched the blog world for pro's and con's.  I didn't find much.  So, I wanted to weigh in on the subject.

I LOVE LOVE LOVE Seraph's G-tube.
-her oxygen stats are noticeably better without the constant tube in her nose.
-she used to get nosebleeds all the time when she had the nasal tube. (Blood thinners are common for CHD kids, so the bleeds would be hard to stop.)
-it was impossible to suction out her nose for colds (which did lead to worse colds)
-We can easily vent her tummy (this is like burping - but easier to do! plus Seraph can't actually burp now that she's had a Nissan to correct her GERD.)
-easier to place the g-tube--faster and you can do it at home!!!  (Yes, you have to carry the kit with your baby all the time, but after you do it the first time you realize it's not that big of a deal - like putting a ointment and a bandaid on a ouchie)
-her oral aversions have lessened (but not completely disappeared) since giving up the nasal tube.
-no more taping her face -- red, raw, weeping skin on her cheeks
-once she learns to eat orally, the g-tube hole closes up naturally very quickly :)

There have been a few bumps in the road. Here's some tips to help you avoid them
G-Tube Problems and fixes:
1-Dehydration. When Seraph was learning to crawl, she was flat on her tummy a lot.  She was more mobile, so she gained muscle and lost an appropriate amount of weight.  Result: the g-tube was too big.  It leaked while she was sleeping on her tummy.  She lost all her fluids all night long.  In the dark, I just didn't notice the crib sheets were wet.  It cost us a trip to the ICU to get her re-hydrated.

Prevention: Check g-tube size.  It only works if it's snug against the underside of her skin.  If it's snug with 4 gauze pads, that's OK.  If you need more than 4 gauze pads, it's too loose. You can GENTLY pull up on the g-tube to see how far it comes up.  (You'll notice when you're cleaning the site, anyway.)

IF it's too loose, you need to get a new size.  If you can't (like there's a wait-time for how soon your insurance will cover it, or while you're waiting for delivery)....instead of gauze, you can use 2 pieces of toilet paper or ½ a piece of a tissue, rolled up like a cigarette, and then wrapped around the tube.  The idea is to lift the tube enough so it's right next to the under side of her skin even when she's on her tummy.  (don't pop it out)  Wrap the rolled tissue around several times and then tape it down. The kleenex/tissue won't get wet because the site won't leak.

ALSO:  ask your doctor if you can replace spilt feeds with an equal amount of Pedialyte.  This will prevent dehydration and keep your baby out of the hospital. (Pedialyte has powder mixes now, too.)

2-Granulation tissue--raised, sometimes painful, red tissue which can develop at the hole in the skin.  Granulation tissue can bleed and promote leakage of stomach contents through the stoma onto the surrounding skin.

fix/prevention:  Mix 20ml water with 2 drops Eucalyptus Oil.  Use a cotton ball to clean the site with this Eucalyptus-solution every time you clean it.  You can use this instead of soap because it's a natural disinfectant and antiseptic.  The skin will heal, the site will work better.

Write "G-TUBE ONLY" on a tube of your favorite diaper cream.  Use it only for the skin around the gtube.  This protects the skin if some of the stomach acid leaks.


I know it sounds crazy, but it's really so much easier than before.  Plus, she's happier and more mobile.

So if you're in that "should we really get a g-tube" boat, worry less and just go for it :)

*Gulp*

Our heart baby hates food.  The doctors didn't prepare us for that.  She hates touching food.  Sometimes she'll tolerate smelling it.  New textures are icky!  (and all textures are new.  Her favorite texture is the thin, smooth oxygen cord...or any cord, really.) We feed her through a G-tube for now. She loves spoons and cups, but won't touch food.

Seraph loves her new mobility, but still hates eating.  Today we played a game where I put Scooby Snacks (the graham cracker kind) in her hand and then she puts it into my mouth.  I don't think she knew it was food.  She loved the game!  She even put the Snack in her mouth a few times!  Mmmmm, cinnamon! 

After, I thought she might want some water.  So, I cradled her and gave her drops of water from a tiny bottle.  On a whim, I sucked on the bottle loudly to show her.  Then put the bottle to her mouth.  She sucked out water!  No, you don't understand....all babies know how to eat but she just doesn't.  She hasn't sucked on a bottle since before her 2nd heart surgery--at 4 months of age!

We played with the water a bit, and then I switched it out for some (vanilla flavored) formula.  Success!  She drank 4ml of formula, and then another 3ml of formula.  Yay!!  She passed her swallow study months ago, but it never mattered as she wouldn't let anything in her mouth.  (Except the barium.  Boy does she love the taste of barium.  Think bitter.)

It's been so long since we had any progress in the food department.  I'm sooooo excited for her speech therapist's visit (Thursday).

She finally explored far enough across the kitchen to find the toy cupboard!  I've been wondering how long it would take her to find it.  In the past, she's avoided the kitchen because she likes the feel of the carpet much more than the tile.  I think the toys will win out from now on.  It happened after the other kids were in bed.  They're going to be happy for her, too.

Good job, lil girlie :)

Little Seraph

Seraph is so playful!  She doesn't mind when Angel shoves toys in her face (usually Elmo).  She still cries when one of the girls screeches/screams in delight - a problem because sometimes seeing Seraph is enough to make them scream with delight.

I wanted to post a video, but I can't figure out how to post it on this new editor.

Anyway, Seraph is spending good chunks of time on her hands and knees!  I haven't seen any actual (real) crawling yet.  She still army crawls and rolls when she wants to get somewhere (or away from something) fast.

Today she went from her back to sitting up all by herself!  I'm not sure how...we were playing games at the table and when I looked over she was sitting.  She's yet to do it again, but I'm watching for it now :)

We had some issues with her g-tube leaking (again) yesterday....but a long internet search turned up a quick fix -- stuff folded tissue between the button and the skin.  Crude, but it works.  She's fine on her back, but on her tummy she pushes the button down and then the balloon seal is broken and she leaks.

There's a nationwide back-order on her newest diuretic medicine.  The hospital was almost out so they only gave me a week's worth.  Hopefully I can find someone who has it on their shelves (or someone who can compound it).  None of the weekend pharmacies had it so I'll be trying again tomorrow - wish me luck :)

Baby Oatmeal!!

Seraph had her first taste of oatmeal today. (OK, technically I snuck her a taste months ago...but her first official taste...)

She LOVES food. Her therapist thinks her muscles will get strong fast. She might be able to take a (thickened) bottle in a few weeks!! Her oral aversions vanish when the oatmeal gets close to her mouth. She had some trouble at the end, but was fine once we vented her g-tube. Next time we'll feed her while venting(!)[venting is leaving the tube open so if she needs to burp it can come out the tube instead of getting stuck in her tummy]

Once she's doing really well on real foods, we can take out the g-tube and let it heal over. That's still a long way off....but maybe not as long as we'd thought :)

Seraph is thinking about eating....

She got her G-tube button today (a more compact g-tube with easier maintainance).

Then she passed her swallow study! She still can't drink really thin liquids - like baby formula. She can drink nectar, eat baby-food bananas and applesauce, and drink thickened formula. I'm excited to see what direction her speech therapist takes her (starting tomorrow!).

For the swallow study, they squirt food into her mouth that has barium mixed in. Then they watch her xray as she swallows or aspirates it. Her favorite was the unflavored barium. This was her favorite part of the day. She perked up and you could tell she wants to use her mouth for eating.

Good job, lil girlie :)

Wait....!!

Someone replaced my baby Angel with this sweet, little girl! She stands on her own now, and takes lots of steps without getting very far before she falls down. She looked so grown up today, I can't believe she's almost a year old....

She's almost over her croup. She's not as needy....more explorer-girl again.

This is good because.....

Baby Seraph started on her feeds today - yay :) With a tiny bit of help, she made the diaper they were waiting for. They started her off with just 5ml of formula per hour. They increased the amount every 4 hours. Her tummy is happy! It's been sooo long since she had food going to her tummy (instead of her small intestines). I'm happy she's handling it well.

....So, we were all on schedule to be over the croup BEFORE Seraph came home....and then Delightful Finch picked tonight to come down with a fever. No horrible cough yet, but I'm scared.

Off the Vent!

I wanted to watch Seraph's spontaneous breathing trial (where they turn the vent way down and see if she breaths OK all on her own). When I arrived, they'd just barely extubated her!

She's never been extubated so fast.

She aced the test. She did so well, they skipped the high-flow oxygen step and put her on normal oxygen. Then they had to turn that down because she was still too high. Good job, girlie!!

No, that's not a sucker. It's a pink sponge. The nurses clean her mouth with them. Seraph LOVES to suck on them. It's like a tiny drink for her. Her throat must be hurting from that tube, because the only time she was happy was when she had a sponge to suck on. They don't let her have the sponges often because she loves biting them even more than she loves sucking them.

They've eased off her meds some, too. Hopefully she'll be feeling more like herself tomorrow.

She's not ready for food through her g-tube yet. They plan to keep her in the PICU for a few more days.

Seraph's GI Surgeries done!!

Here's Seraph at 5am in the waiting room. Usually her trips to the hospital only have one parent. She was thrilled to have both of us with her.The early hour didn't bother her one bit.

Note the redness on her cheeks. That's from repeated retaping of her NJ Tube. That cheek will heal up soon. The NJ also gives her a huge gag reflex. It bothers her nose, and she feels better after she pulls it out.

Seraph had HUGE smiles for her daddy. OK, she always has huge smiles for her dad. It's hard to be jealous when I get to see her being soooooo sooooo happy.

Mommy got big smiles, too. Seraph loves playing with my hair.

More huge smiles for Daddy. Huge smiles for all the nurses, too - even while they were checking her blood pressure.

Not so happy when they placed her IV. ...but a few minutes with her dad and she was happy again.

They were NOT able to do the surgery laprascopically. The pressures in her heart were too high. So, they made an incision just below the scar from her heart surgery. They expected the surgery to take 3 hours. It took 5 hours. We took turns trying to sleep in sleep-resistant chairs. Next time we're going to sneak up to the couches by the piano for naps.

Part way thru, we jumped up and donated to a blood drive. They had free grape juice after!! I hadn't given blood since college. I got up too soon after and got dizzy. I had to lay on the floor with my feet up listening to cool stories about wolf attacks. Anyway....

Seraph's surgery went well. Her NJ tube is gone for good. Her reflux should be gone, too.

Now comes the tricky part - getting off the vent. They had to intubate her for the surgery. They kept her sedated over night. Today they're easing off her sedation so she can start to breath a bit on her own and get rid of extra fluids around her lungs. Her lungs are very wet today.

Seraph has always been slow coming off the vent. Please keep her in your prayers.

June 2 - Seraph's Intestinal Surgery

Seraph's intestinal surgery is scheduled for June 2nd.  Because of her heart history, any surgery (being put under general anesthesia) is more risky.  So, they'll be correcting several intestinal problems all in one surgery:  nissan fontifcation for GERD, placing a G tube for feeds, and Ladd procedure to fix her intestinal malrotation (this includes removing her appendix). 

We expect her to be in the hospital for less than two weeks.  Immediately following the surgery (while she's still sedated), they'll do a full echo cardiogram on her heart.  We hope to hear good news about her heart.

They will have to intubate her for the surgery. It breaks my heart to put her through this again. I know that getting rid of the reflux and being able to eat normally will be worth it.  But, there's no way to convey this to her. During her recovery, I plan to be at the hospital with her as often as I can get away.

This is a good step forward for Seraph.  Thank you for keeping us in your thoughts and prayers.  *hugs*

Gastrostomy Tube (G Tube)

While she's learning to eat, Seraph will still be fed through a tube.  Instead of an NJ tube (which goes through her nose), she'll have a G tube which goes right into her stomach.

They'll put this in while they're doing the Nissan.

After she learns to eat, they'll take it out and it'll quickly heal up. (Time wise, it'll depend on her...but I expect it'll take years to catch up on swallowing, etc)

Because it will be under her onsies, Angel won't be able to pull it out!  So, Angel and Seraph will be able to play together all the time :) 

She'll still be on oxygen, but we're very excited to get the food tube out of her nose.  Her gag reflex will calm down.  We won't have tape her face up so much.  We won't have so many late night visits to the hospital to get the tube replaced.

At first, she'll still be on continuous feeds.  But in a few months, we'll be able to switch her to eating every 3-4 hours during the day. She'll have more freedom.....which is good because she's getting closer to sitting up....and crawling won't be that far behind.