Feeding Tubes And How To Entertain a Well Child in a Hospital Room..

Well, we thought we had managed to put off the feeding tube for a little longer, but on the 17th Anna had her feeding evaluation with the Feed/Swallow team at CHOP. She has been recommended for a 4 week intensive feeding therapy program. The only sticking point was that she didn't weigh enough to qualify for the therapy. Seems crazy right? There reasons being that the kids tend to lose weight at the beginning just as a part of how the therapy works so they need the children to be at a certain baseline to begin.

So their feeling was admit her immediately to have a feeding tube placed so the sooner she gains the sooner she can start therapy. We agreed to it because at this point it looked like the tube was inevitable and we might as well squeeze in another admittance before our deductible renews.

Of course she ate great while at the hospital. Here she is her last dinner before they put the tube in.

And here she is the next morning, with tube, eating breakfast.

She did great the first night. They start her pump at a fairly low rate and then would raise it every three hours. She tolerated the feeding great. No throwing up or issues. She ate a great breakfast the next morning and in general had a great day.

The last time we were at CHOP she was recovering from surgery and so keeping her fairly amused was easy as she wanted to rest a lot. But being in the hospital just to have a tube put in your nose is a whole other story. She was still full of energy and was climbing the walls.

We wandered the halls, visited our favorite nurses from the surgical floor, visited the various fish tanks around, and then we were left to sitting in the suitcase....

Climbing the folded stroller and checking out the plumbing...

Climbing in carts...(which btw I thought was fine, but the nurse told her she couldn't do that LOL Oops)

That first day Claudio and I also received training to learn to put the NG tube in ourselves as we will have to change it at least once a month. And before each feed we need to draw fluid from her stomach to test Ph and to flush the line. We also learned how to set up her pump/feedings.

Here is what we practiced on.

I was shocked that the nurse hadn't named him!

Ooops there she goes again..

Because the anatomy of the dummy is a bit limited the nurse told us that it wasn't actually too realistic of what it would be like to put the tube in Anna. So Cla being the brave, selfless guy he is volunteered to let me practice once on him!!! So here they are....both with their tubes in!!!

Unfortunately our stay at CHOP went downhill from here. Anna and I both woke the next morning suffering from a stomach bug. She puked up her entire feed from overnight (she was just a half hour short of finishing the feeding) and I wound up throwing up several times. My mom wound up having to come and get me and take me home with her. Cla rushed over to take care of Anna. Then Cla wound up getting sick too (And grandma, and aunt Silvia, and Nonno, and Gianluca, and lastly Benjamin on Christmas Eve). Anna never tolerated another feed in the hospital. I am not even sure why things went the way they did and why they didn't give her tummy time to get better. After a few terrible nights of puking for Anna I put my foot down and told them we were going home for Christmas.. To make a long story short we put Pedialyte ONLY in her pump for a few nights and she did fine (although that included one night where the pump was malfunctioning and some guy from Delaware drove to our house Christmas morning to deliver a new pump!). Tonight will be her first night with formula in her pump again (a mix of pedialyte and formula). As long as she weans back onto the formula with no problem we will keep ourselves out of CHOP for a while. If she continues to be unable to tolerate feeds we will have to be admitted again. So prayers please for successful feeds!

A Prison of His Own Making

Wordless Wednesdays

FOR TODAY...

Outside my window... It is blustery, gray, and cold. I love it. Just add in some snow and it would be a perfect late Fall day!

I am thinking...About the kids. Ben and his seeming inability to potty train. There are few things in the world grosser than cleaning up a poopy accident. Anna had her first official weigh in post surgery. We were at the nutritionist this morning. She is 17lbs1oz which is an weight increase, but she also grew about an inch so she is still actually thinner. She has lost more ground and we were told she is categorized as "severly underweight". So it has been recommended that she start supplemental tbe feedings via a tube in her nose *sigh*

I am thankful for...Outstanding medical care.

From the learning rooms... We have only done table time a few times. Mostly because Ben hasn't been wanting to do it and at his age it is not worth pushing for. So we have been learning about this season of Advent and the Feast of St. Nicholas, and Christmas. We have been trying to learn about going on the potty. We are learning about manners. And that little brain is always churning!

From the kitchen...Lemon garlic chicken in the crockpot. St. Nicholas cocoa in our mugs. Candy canes and chocolate coins for snacks.

I am wearing... denim skirt and black shirt

I am going... to do some laundry. Do some knitting. Do some wrapping. Do some snuggling.

I am reading... Jane of Lantern Hill. I finally finished the Emily series and I feel like I have lost all my dear friends...having finished the Anne series, Little House series, Betsy Tacy series, and now the Emily series I have been acquainted with all of these dear girls intimately and now they are done and there is nothing left of them for me to read. I am heartbroken!

I am hoping... That Anna's feeding tube can be placed before Christmas and that it is not something that is going to drive her bananas or be too difficult for us to manage.

I am hearing...the TV on in the background. The kids are napping and I hate silence.

Around the house...We have discovered that we are too poor to finish finishing our basement. We will not have the money to put down carpeting right now. So once the spackling is done and I finish painting we are done for now. We are hoping that perhaps our tax return this year will be sufficient to pay for the carpeting, but not sure on that as we are being bombarded once again with heaps of medical bills.

One of my favorite things... Benjamin

A few plans for the rest of the week: Nothing much. Need to make some appts for Anna. Need to get my Christmas cards out. Wednesday is a holyday of obligation...so Mass.

Here is a picture thought I am sharing: Nothing in the world as beautiful as sibling love.


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St. Nicholas Day

Tomorrow is the Feast of St. Nicholas and so today after Mass there was a big potluck meal at our Church to celebrate.

Father reads the story of St. Nicholas to the children and then once he finishes the story St. Nicholas sneaks in from the back to surprise all of the children.

We are blessed at our church to have a lot of wonderful families. The girls are always very happy to take the little ones by the hand and show them away. Here is Ben in line with one of his friends. She made sure he got to meet St. Nick.

And daddy took Anna up to get her gold coin.

In preparation for tomorrow's feast we all put our shoes out by the door so St. Nicholas could leave us a few treats. I also made the mix for St. Nicholas Cocoa to have tomorrow morning

Wordless Wednesday: Christmas Picture Outtakes

It's A New Liturgical Year!!

It is out most favorite time of year!!! We LOVE Advent!! Today is the first Sunday of Advent and this begins the season of hopeful anticipation and preparation for the birth of Christ!

This first Sunday we always break out our big nativity scene and assemble it. This year we kept things on the simple side and a bit smaller. No water falls, streams, ponds, or caves this year. But it still looks lovely.

This year Ben helped make design decisions and put a few things in place.

And the little critters eating some macaroni and cheese. This has become somewhat of a Sunday tradition....mac n cheese at the kiddie table usually while watching a video as a special treat. Tonight they just watched teh nativity scene go up!

Uh! What a handsome boy!!

Wordless Wednesdays

Worship

Nothing like a little girl's love for her daddy....especially while wearing a smurfy hat and sharing a snack!!!

Sweet Moments

Benjamin spent several days re-enacting this sweet scene below with some of our dollhouse furniture and figures.

He would take the baby and put it carefully to bed, attach its "music" (mobile), and then seat momma and pappa carefully in chairs to watch vigil. In the crib with the baby he would put a little hair bow of Anna's that I think was functioning as a stuffed animal or lovie of some sort.

For some reason this just struck me as so tender and sensitive. We have bathrooms and bedrooms and kitchens for the dollhouse but he just gravitated to the sweet nursery and the care of the little baby and that it should be put down for a nap lovingly. I hope he always has such a sweet and tender heart and I pray he learns of these tender scenes from what he observes in his own family. What more could a momma ask for?

Here is one of those sweet scenes I am referring to: A quick outdoor Fall lunch with daddy.

Who cares about raking leaves when you can have silly faces and pizza with daddy!!

Anna's Health Update

Well we are home at last!! We came home Saturday...so 4 days ago. Lots of ups and downs since my last post. Poor Anna must be like Job.


Anna progressed from her munching on crackers and juice to eating her usual things (pasta, tuna salad, cereal, sausage, fruit, etc etc). Here she is very excited about a banana!



Unfortunately soon after this picture was taken Anna spiked a fever that at its highest was 104 degrees. To make a long story short Anna's PICC line wound up getting infecte with staph and fungus. The line had to be pulled an instead of going home we had another several days stay so Anna could receive IV antibiotics and antifungal medication.


Because the PICC line came out they had made the decision to stop her TPN (intravenous nutrition) because that is what was blowing out her IVs and now she needed good IVs to receive the antibiotics. Luckily she squeaked by by the skin of her nose on calorie intake and avoided another NG tube in her nose for feeding.


As soon as the PICC was removed her fevers subsided and the infection was caught fast enough that the infection did not enter her blood stream but was localized just to the area of the PICC, so she improved quickly. She is now receiving one more week of oral antifungal meds at home.

I wanted to get good pictures of them removing her IV after her last dose of antibiotics and of signing the discharge papers, getting dressed, and walking out, but of course after this not great photthe battery on the camera died and I got nothing else! Oh well...at least there is the IV and a nice shot of her really cool scar.

Getting everyone home and reunited was SOO wonderful! Benjamin had clearly been missing and worrying about his sister. He has been showing her a lot of love since being home. It is incredible to watch Benjamin learn the dynamics of sibling relationships. He is learning how to successfully negotiate toy use, how to play together, how to be sweet and gentle.

And Anna is in full mimic mode. So a common "argument" I hear around here is Ben will tell Anna "this is mine". And she will respond "MINE!" very excited that she can mimic the word she just heard. But he thinks she is arguing so he will say "no it's mine!!" and she will respond "MINE!" LOL! It is hysterical to me.

Here is a loving moment between brother and sister soon after we got home: