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Friday, April 27, 2012

Life At Home

Pin It                                  IS BUSY!

Very very busy!

But you just want to hear about Ivy and I can't wait to tell you!

She is thriving and doing sensational!

And yet there is a lot going on with her feeds that have me drowning!

Ivy began eating the day of discharge and clearly shows that she wants to eat and drink. 

However she has the NG tube due to the fact that she can not swallow any fluids due to the damage from the ventilator and she needs at least a month for that to heal. She also can not have any fats due to the chylothorax that occurred with her diaphragm plication and pacemaker placement. The fat restriction will continue until the cardiologist tells us so and who knows when that will be?

So with such restrictions, it would be very difficult to get 1066 calories a day in our little peanut. Even when eating, that is a huge number on such a restricted diet.

So the plan when we left PCH, since they wanted to encourage her to eat real food, was to leave her on night feeds and give her real food during the day. What she gets at night is super high calorie (fat free) baby formula. 

Well, she has been throwing the formula up. And by Thursday morning I was crying in frustration because I can not tell if she is throwing up her medicines too. Thursday morning she woke throwing up, her feeding tube was clogged and her meds were not going to go through, it was terrible! So I  pulled her tube out and gave her a bath and decided to see how breakfast went with no tube in her throat. I figured if there was a difference in the way she ate, I would just re insert her tube every evening when it was time to start her feeds and then take it out again every morning. Well it certainly made a difference. She was so much better able to swallow and gulped down lots of cold yogurt and tofu. Then it hit me! Her meds..... Duh?? How would I get her many many syringes of medicine in her little body throughout the day? She can't have liquid? She will aspirate.. 
Well, I used her thickener and thickened her medicines, put them in a big syringe, dipped the syringe in water followed by a bowl of sugar. I let Ivy hold the syringe and stir the sugar with it. I showed her how yummy it tasted and when she put it in her mouth to taste it I shot the gel turned medicine far in to her mouth. WE DID IT!!! She did not like the taste and the gag reflux kicked in but the interesting sugar bowl in her hands helped to keep her from throwing them up and WE DID IT!!! So that is how we got through the rest of the day. But all we did ALL DAY, was feed and take medicine. Really, thats all we can do when you need that many calories... 

At 2:30 Ivy saw her pediatrician. My doctor at Phoenix Childrens recommended this doctor as the best in the valley and she happens to be located in my city! We decided to change our kids over to her office and OH MY WORD am I ever glad we did!! She is a treasure!!! We just could not be more happy with her! And she told us that Ivy looks amazing!!! I was so worried! I really was so stressed out. I was terrified she had been throwing up her meds, I was concerned that her energy level is nothing like what we all had pictured it would be when we came home and her incision looked a little red and puffy at the very top, and most of all, this throwing up...... well it had me really scared! 

But..... the doctor said, after what she has been through, and how short of time it has been, She looks absolutely fantastic!! She said her incision looks excellent. She said she was absolutely amazed by how fantastic she looked after what she has overcome! 
Wow!! Huge sigh of relief!!

And then.... she recommended we keep Ivy off the feeding tube until next Wednesday. At that time we will follow up with her and get a weight. Of course if things are not going well, we will see her sooner. But for now, we feed feed feed and we return in a week to see if she is gaining weight. Ummmmm can I just tell you how much pressure this is? But in a good way too. Ivy needs us to do this for her, and do this we will!!!! We did not meet our calorie goal yesterday. I am hoping to do better today, yesterday we did not have the whole day to count since we did not see the doctor until late afternoon. Today will be a better day.... I hope. And if it is not, I am capable of popping that tube back in her at any time. I just can't be guaranteed that she will not throw the formula up at night so it is not a for sure calorie adder. (is that even a word?)

Like I said, things are busy. Before I could even hit post this morning the littles woke up and here it is 2:40 and I am back to try again. I wanted to add that at the time that Ivy went down for her nap we were at 380 calories. We get the bulk of our calories from Gogurts. They are only 2 ounces and 70 calories!! She can't have drinks so these help her thirst as well. I can usually get 5 in her a day! But.... her little tummy throws up easy and she tires very quickly. And her throat hurts, so most foods without fat are tough for her to swallow. sigh.....  5 yogurts makes 350 calories, sounds like a lot but its less than 1/3 of our goal. All tricks and suggestions are greatly appreciated here!! Please post a comment! I need you!! And remember, no more than 1g fat per serving and it can not be a liquid.  Honey is the thinnest texture she can have.

As for home life...
The girls are doing perfect in the same room! Lexi is the whole reason we get Ivy to eat! If she takes a bite then Ivy wants a bite. Everything has to be just like Lexi, it is sooooo completely sweet!!
They are cute cute cute together. Every day they become a little more ~sisterly~ :)  Ivy's energy level is still pretty low. She tires easily and she mostly just sits. I thought there was reason to be concerned about that but our pediatrician reminded me that she was in heart failure for 2 years, it is more than just her heart that is recovering, it is her whole body. She will gain it little by little especially as she heals and eats more. I don't know why I expected her to be running in circles after all she has been through... I just needed to hear that she is ok :) She is amazing. The stress I have to put her through all day with her foods and meds, really just amazes me with her peaceful disposition and huge smiles. She is saying so many words and new sounds and can feed herself like a big girl when the little peanut was just barely introduced to silverware! 

Enough words......... 

Sorry about the sour face (so darn cute anyway) but Little Miss does not like sitting on the ground outside :(

This is Love.
This is Hope.
This is Faith.
This is Joy.
This is Happiness.
This is Family.

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Monday, April 23, 2012

A change of plans

Pin It Tonight I am staying up!

I am cleaning out the ~little house~ at RMH

I am thinking about how much I will miss seeing my daughter interact so sweetly with all the nurses we have fallen in love with at PCH. Super special people like Jaimie and Chrissy and Jennifer and Jodie and Mary and Cindy and Jessie and I could go on forever..... The love and kindness they have showered Ivy with is just more than words could express.

I am studying Ivy's meds and their scheduled doses. 

I am making charts and checking lists.

I am singing very loud and dancing around a bit.

I am smiling ear to ear!


Well, there has been a change of plans.

When Doctor Nigro saw Ivy this afternoon he said that she was looking way too good and to be there any longer. She had Been busting a move or two in the halls all day long. We must have spent 5 solid hours today just out walking the halls. Ivy was a hoot. Stopping at every hand sanitizer dispenser for more soap, saying Hi very loud to every passing doctor and nurse, and playing with her buddy Brenden. The two had a picnic together in our room and while Brendens mommy was out tonight they met up again in Brendens room for some more play time. They are so sweet together!! Brenden has a very rare heart, 1 of only 50 in the world! He also has dwarfism. 

Isn't he just a little love!

Back to the change of plans....

We are going home tomorrow!!!!! Home!! That's right! I have to say it again because it sounds soooo good! Home!!!! Home home home home home!!!!!!!!!!! 

Thank you God for choosing us! 

Thank you everyone for standing in the gaps and lifting our daughter in prayer every day.  We are forever grateful!!!

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Thank you Lord

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I'm sitting here typing this as Ivy Joy naps.

And I can hardly believe how far she has come and how close she is

                     Her upper GI showed a reflux and aspiration

So everything we are doing, we will continue the same and like                                     everything else, this will pass.   

She continues to drop in to the low 80's and sometimes the low 70's when she sleeps. So the plan is to keep her on oxygen during sleep so that she can grow and get strong and have this little bit of assistance while her lungs get stronger and her heart figures things out. 

Lip gloss (peppermint bath&body works) helps reduce her cravings for chocolate haha. There is fat in chocolate so she can't have it :(

This fantastic hair pretty and leg warmers were a gift from the most amazing family we all know and love! Thank you Rouse family!! 

Ivy sleeps like an angel. I just sit there and look at her!! Seriously!

Quincie is here!!!! Daddy is back to work. Everyone is happy!!!!!!!!

Lexi is singing!!! (She sings ALL day long! Taylor Swift is her current favorite :)

 Ivy joins right in! 

And here they are singing together!!!! I am so excited to spend my days with both girls and with school almost out, all my babies, ALL SUMMER!!!!

This is Jessy. She is one of our RT's. Like I have said before, everyone here is my FAVORITE!!!!!!! And Jess is NO exception! WE LOVE HER!!

And she loves Ivy!!

So here are the non photographic details, WE ARE VERY CLOSE TO GOING HOME!!!!!!! LOOKING LIKE WEDNESDAY!!!!!!!!!

And this song comes to mind!
 ~There is nothing like the warmth of a summer afternoon
Walking in the sunlight, being cradled by the moon
catching fireflies at night, building castles in the sand
Kissing mama's face goodnight and holding daddy's hand
Thank you, Lord, how could I ask for more?~

All these firsts are on their way for my baby girl! 

Thank you Lord!

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Saturday, April 21, 2012

Oh Happiness!!

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                                                               Oh, happiness
                                    There's grace enough for us
And the whole human race

                                          Friend or foe
                                        Stranger or kin
                                         All who come 
                                          Begin again

                                         Hard or frail
                                         Rich or poor
                                          All in need
                                   Need fear no more

Such a thing to give away

As you can see, Ivy is doing fantastic!! She is full of joy, happy all day and blessing the 5th floor with her contageous joyful spirit and precious smiles! We are awaiting an upper GI scheduled for Monday. We are concerned with her swallowing, she throws up a lot and it happens just seconds after attempting to swallow pudding thick foods. She is keeping cheerios down?? 

I just could NOT ask for more!!!!!

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Friday, April 20, 2012


Pin It The changes and progress in Ivy over the past 3 days has been that of weeks! She has us all completely awestruck at the way that she blooms, like the video image of a flower growing in fast motion. So beautiful to watch!! 

So here is where we stand with our little flower~

                   Ivy is pulling herself to standing position!!

She is taking steps with her hands held!

He legs are a tad wobbly, exactly what your would expect from someone who has been laying down for almost 4 weeks and has lost weight and nutrition.

She is happy!

She is drinking her thickened disgusting water (poor sweetie) and we will start soft foods tomorrow.

Her last chest tube was removed today!

                              She is off all drips and pumps!!

She is being weaned to room air tonight!!!!!! That means you might see her without a cannula by tomorrow! Yay, Goodbye mustache!!

She has made a friend here. The 5th floor is all CVPICU (all heart kids) Her friend is 20 months old and he is waiting for a heart. He has been here since January, so needless to say, the longest on this floor. Ivy gets second place for the longest stay currently. They are so cute together, we took a couple walks together today and they pass each other their toys and jibber. Ivy blows kisses to every one we pass as we cruise down the halls.

I am taking my CPR class tomorrow and getting my NG tube insertion training. I am reading about the meds we are taking home. They don't start these things until you are getting close to going HOME!!! HOME!!! Thats right!! We could be going home late next week!!!!

On top of tube feeds, Ivy will be on several meds when we go home. 

Vasotec. This helps the blood vessels relax so the heart can pump blood more easily. It treats high blood pressure.

Asprin. Thins the blood.

Lasix. A diuretic. When extra water is taken out of the body, the heart does not have to work so hard.

Calcium. Diuretics and vasotec will deplete the body of calcium.

These are the ones I have been educated on so far. It is so exciting to think about Ivy being this close to finished here!! So amazing!!!!!

We are abundantly grateful for those of you who continue to pray. Thank you. I realize we are not home yet, but we are grateful for the prayers that continue to encourage us to take it one day at a time!

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