16 pounder

Well guys, Emilia is going to hit 10 months in two days! She weighed in at 16 pounds for the first time today!

We are over the moon with her growth and can't believe we have such a BIG BABY :) We frequently get asked about when the tube will come out...not until she's taking about 90% of her calories by mouth. Unfortunately, she is gaining her weight via tube feedings as she takes about 10% of her calories by mouth currently. She just doesn't like the bottle and is still figuring out food. She seems to be liking the Cerebelly pouches and loves our chef neighbor's Milk & Patience Aussie Style Yogurt made with coconut milk. Available at Sprouts if you live around Dallas (it's the best yogurt you've ever had; even if you aren't a yogurt fan, you will like this yogurt).

Emilia does an awesome job drinking water out of a mini water bottle and wants to be in charge of the spoon at meal time (which we gladly handover).

This past month we visited Punta Cana, DR. Emilia enjoyed herself. She dug her toes in the sand and didn't mind it. She did not like the waves but was a fan of the pool. She really enjoyed that they served water in wine glasses and that is her new favorite glass of choice, lol.

ATTENTION PRAYER WARRIORS:

Tomorrow we have an eye exam and I am wishing and praying and hoping so badly that with this weight gain we have also seen growth in the blood vessels in her eyes to the point where they have completed growth and we can stop going and don't have to have laser.

Emilia screams out in her sleep and cries sometimes and it is just heartbreaking to think of all of the different things she could be hacing a bad dream about. But we pick her up and hold her and give her lots of kisses and love.

She's asleep on me right now, she's so long now that i have to hold her sideways. ❤️ I'd love to fill you guys in more on all of her weekly appointments with physical therapy, speech and feeding therapist, her dietician, and even GI. But it's time for medicine. With reflux meds and donor milk from DAIRY FREE donors - she is headed in the right direction.

Can you even believe she'll be a year in two months?! 🤯

Roll Out

Our tiny friend is coming home! She gained a smidge for 2 days then had some good growth the last 24 hours; .17 lb.

We woke up this morning with a scary start of her throwing up and choking on her own vomit. Tube pushed out of her nose. We've had to put it back in about once a day. Today, Angelica, Daniela (nanny) and I all trained on how to insert it, administer meds, flush the line, check placement by pulling out stomach juice and testing the PH on a little strip.

They tested her anatomy and all checks out. She will go to speech therapy to learn how to suck. She is on two different reflux meds, a gas medicine and still throwing up but not nearly as much - so much less, she is gaining weight. The tube is also a big factor as she has a strong aversion to eating. We've got a team in place now to help us work through all of that. They are even going to come to the house!

The team here has been very patient and checked all the wild things I worried about. Bless them for that.

Thank you to everyone for praying for her!!!

Emilia has been poked more than anyone should in their lifetime. May we only have happy growth updates from here on out 🙏

Day 3 update - no weight gain

It's been a long weekend. Good news is they've dropped the blood draws to every 12 hours instead of every 8. They took out the IV, for now. And we've been able to make her laugh and smile each day.

Bad news. She weighs almost a pound less than when we brought her. She's burning a ton of calories screaming and crying. Next poop we will test for allergies.

We've put the feeds through the tube on a pump that spaces the amount out over an hour and have lowered the amount given and increased the frequency and that seems to be helping with the vomiting. She's still having some vomiting but much less so we are hopeful we can start some weight gain today.

Next steps are to sort out getting her to take it orally but we can even do that with outpatient therapy.

She will be going home with the feeding tube and may have it for a couple of months while she catches up in weight. Angelica and I will have training on how to do all the things with it this week.