We got the final word

We are headed home tonight...lots to do before we go, but we are going!!

C

50 weeks

B is 50 weeks old today!  I just got to the hospital, and she is a sleeping beauty this morning.  Daddy stayed the night again so I could go home to shower and rest.  We normally hang signs on our front doors every Thursday, but since we aren't home we had to move the party.  I grabbed the first thing I could find that we could hang up in the room...it's a Star Wars birthday banner.  She'll love it!

Where did we leave off yesterday???  We stopped the chimney feedings and the pump is directly attahced to her gtube line.  She is still on continuous feedings (24 hours a day) but we hope to start condensing those down to regular feedings today.  It will probably take a week or two to get back to normal.

Just had my gtube lesson...we are ready to go.  Hopefully we will be home later today!

C

Wed morning

B woke up at 5:30am feeling like herself.  She was smiling and happy.  Hooray!

Overnight she met her goal for feedings and is off IV fluids.  There have been no feeding issues.  She is napping now.  I'm hopeful that when the doc makes rounds today that we can go to regular bolus feedings.  She is being fed continuously now...meaning it's slowly dripping in her gtube 24 hours a day.  Bolus feedings are like regular feedings.  A feeding of a certain amount...time between feedings...another feeding...just like we eat.

The nurses fixed up a "chimney" feeding that we still have going. She has a long piece of gauze hanging over the bed with a syringe hanging over her belly.  The feeding pump is slowly dripping into the syringe which is hooked to a line that goes into her gtube.  This is to let any air out that gets in there at first.  When we start the bolus feedings we will ditch the chimney part.

A reader emailed me with the REAL scoop on the feeding pump.  It's not discontinued!!  They are just changing distributors.  So...I started my quest to get the pump we really want this morning.  Like all other things, this may take me a few days.  Fingers crossed!  

I love when y'all email me.  It lets me know I'm not blogging for no reason.  I know my dad reads this, but some days I think that's it.  Haha!

I'll try to update later.

Oh, and I'm hoping to go home tomorrow!

C

Guess what

Guess what...I just realized that B will be 1 in 17 days...wow!

I just wanted to share this b/c it's cute and totally my kind of thinking...

The gtube needs something around it in case it leaks.  The leaking can cause irritation to the skin.  Most folks use gauze and tape...so I've been told.  I found a tutorial on Pinterest for a cotton "button buddy" with a snap or velcro.  They can be made of different materials and thrown in the washer.  This will keep us from using tape on B's skin.  My mom whipped up a few prototypes this weekend.  We haven't used them yet.  Then I was looking around on the internet yesterday when B was napping to try to keep myself awake.  I found the cutest site: www.tubiewhoobies.com  They have gtube pad shapes...how cute!  I  had to order a few.  I love their philosophy...it's so us:

Tubie Whoobies is about embracing what you have and living to the best of your abilities, not being embarrassed or hiding your differences.  We make different products to add function, fashion, and fun to people who do things differently.

So it's Tuesday afternoon around 4pm.  We started our feedings about 2 hours ago.  So far...so good!  We will increase them every 4 hours if all goes well!

It is time for us to get a different feeding pump.  I am NOT good with change...do I get points for knowing this and admitting it?  I have done research for a few weeks so that we don't get one and then find out there is a better one out there.  There are really 2 basic pumps on the market....that I have found.  The Kangaroo Joey and the Infinity.  If I am wrong, please correct me now!  I selected the Infinity.  I selected this particular pump because it's more portable than the Kangaroo.  The Kangaroo has to have a bag hang above the pump.  It has a backpack...but no thanks!  The Infinity can just be tossed in the front of the stroller like we do now or in the diaper bag...no worrying about the bag of milk being above the pump.

We arranged for the pump to be delivered today so that we can practice before we go home with it.  Guess what...it's been discontinued!  What?!?!?!?!  Argh!  Change on top of change...grrrrr!

So they brought us a Kangaroo Joey pump to try.  I will get over it, but I had to have my 30 mins to grumble.  Now, as my mother says, CHIN UP...DRIVE ON!

I can't remember if I told this before...the reason I have an aversion to the Kangaroo is that the guy who first demonstrated it for us the day we came home had never operated one before.  He couldn't answer any of my questions and he actually thought it was okay to have me waste about an ounce of breast milk each day!!  NOT okay!  We laugh about this now...it took a while!  And that whole story turned out okay b/c my awesome friend (LDP) came to the rescue with a pump for us!  We are eternally indebted to her!

B is resting now.  She is feeling a little better this afternoon.  Yay!

C

Tuesday...I think

I think it's Tuesday morning...I think.  It's hard to keep up with the date here.  

B is doing well.  I can't post a pic from here.  She doesn't feel like herself just yet, but we are seeing little glimpses every now and then.

SO...whew...the past few days were a blur.  We stopped her feedings on Sunday night.  Monday we found out she had a possible partial ileus (bowel obstruction) which is common after surgery.  That was another whole day we didn't feed her any milk.  Her medicine is the only thing going in the gtube now.  The doc said that she did have bowel sounds (which is good) but that we couldn't feed her again until she (okay brace yourself for some real unladylike talk...just trying to be honest though) had some gas or a bm.  SO...we prayed for poop.  I went home last night to hang with H and sleep...daddy had a turn staying the night.  This morning I feel refreshed and am happy to say our prayer was answered!

We are waiting for the doc to make rounds today and give us the final okay to start feeding again.

We have had some issues with Oxygen also.  It's very tedious medical detail, but we have had problems explaining to the residents who are here at night that we aren't here to "cure" T18 and the pulmonary hypertension that has come with it (this is the natural banding of B's heart that we feel so blessed by) we are here for a gtube only.  Hopefully we are all on the same page now...B's awesome doc did some clarifying in her medical record for us.  Now we are hopeful that her pain goes away quickly so we don't have to give medicine for too much longer.  This would help the whole situation.

How long will we be here?  I have no idea!  We need to work our way up to semi-normal feedings and make sure there are no other issues.  I'm guessing 2-3 more days.

B is having some pain from the surgery.  It's a fairly large incision...especially for such a tiny gal. 

Prayer requests:

pain goes away quickly

feeding goes well and we can get home soon with no complications

oxygen is no longer an issue

Thanks!

C

In a Room

B is sleeping soundly!  She's had some pain today but it is under control now.  We are in our own room on a floor now...hooray!  And I'm already in love with the nurses on this floor.

This room is great because we can turn off the lights!  B likes to sleep in the dark.  We can also sleep in here...in the PICU we took turns staying up with her while the other person slept in the lobby.

Prayers now: feeding continues to go well and progress to normal feedings and everything continues to heal nicely.

C

Sunday morning post surgery update

I am sitting at B's bedside typing this.  We spent our second night in the Pediatric Cardiac Intensive Care Unit.  We should be moving to a regular room today.

B's surgery went well.  She was very unhappy about having that breathing tube (ventilator) down her throat.  It was hard to calm her.  Apparently she tolerates lots of pain medication.  One nurse told me that that is a characteristic of T21 so maybe it is also one of T18...not sure but signs point to Miss B being that way.  The tube came out before noon on Saturday and she was immediately a happy girl again.  Then her pain meds wore off and it took a bit to get the right combo.  I think she's been sleeping since around midnight.

She has started to have a feeding in her gtube.  It's such a small amount (4mL per hour) at first.

I'm not sure what else the day holds for us...will try to update later.

Thank you all so much for your prayers.  We have so much to be thankful for and each of you are on that list.

On another note, this place is amazing.  I have lived near this hospital most of my life and not known what a blessing that is.  It's like another world here...one where time on the outside stands still.  I've met parents who have been here for weeks and months who sleep on cots in the waiting room every night.  I also met a woman who woke up and started her day thinking it was just a normal day and after an accident had her daughter airlifted here yesterday afternoon.  She literally arrived with just her purse and lives hours away.  Wow is all I can say.

C