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?)
Updated~
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...
SWEET SWEET SWEET!!
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.........
This is Love.
This is Hope.
This is Faith.
This is Joy.
This is Happiness.
This is Family.
