Monday, October 15, 2012

7 Weeks Old

Alot has happened in the last 3 weeks, the good, the bad, and the downright frustrating :) Hence why I have had no time to update my blog :(

I guess this is a good place to start. Two weeks ago, I got Emoree another family visit :) So she has now seen her baby sister twice in 7 weeks. She is so excited about her, and she asks me about her everyday. She wants to know what she is "eating", if I changed her diaper, if she was crying, if she was sleeping... she asks me everyday. I have not missed one day of going to the hospital to be with Anya, and I have also taken a picture of her every single day of her life so far too :) Anyway, here are a few pics from our family visit:

It was everyone's first time holding Anya, except for me, obviously :) Emoree is so excited to be a big sister <3
Now, for the not so fun. Friday, October 5th, Anya was scheduled for GJ tube/Nissen surgery. I was a little hesitant on the Nissen procedure, but after they actually decided to explain it to me and said it would help with her reflux, all was good. I went to the hospital to be with her before they took her, and she was so fussy and unconsolable. Her sats would dip because she was so upset. She was hungry, exhausted, but NPO for surgery so they couldn't feed her, she was just on IV fluids. Then they come in and tell me that her feeding tube surgery was cancelled, that because her sats are dropping and they had to turn up her oxygen so they want to do a cardiac cath instead. I was so not expecting this, I was so upset. My mom left work to come stay with me while Anya was in for her cath procedure, it was a few hours. Turns out, her heart looks great. There was only slight narrowing between her right ventricle and pulmonary arteries, so they ballooned it to widen it but it wasn't enough to explain her de-sats.

On Monday October 8th, they decided to do a ph probe test to see how bad her reflux is, to see if doing a Nissen was necessary. Finally, something that made a little sense. During the test, they put in an NG tube to feed her, but then would have to take it out after feeds and meds to get an accurate measure on reflux. This seemed to be the "magic" cure for Anya, removing the NG tube. She totally went off of the nasal cannula! It seems the NG tube was causing her reflux, which led to her desats. Take it out, and her reflux is minimal. So on Wednesday October 10th, Anya had G-tube surgery and it went great. No Nissen, no J tube. Just a "traditional" G-tube. She has been off of oxygen support since. I am now more than ever ready to bring her home <3

Check me out, with NOTHING on my face!!! Most of you already know, but the big day is tomorrow!!! This past Friday, someone from John Hopkins Peds Home Care brought me Anya's feeding pump that we will be using at home and taught me how to use it. The rest of her feeding supplies and formula are being delivered today between 5-9pm (because of my crappy insurance, her Enfaport formula is not covered, and I have a lovely $272 bill coming to me soon for her formula, but whatever it takes to get her home!). Her prescriptions were given to me on Thurs-Fri and I picked most of them up on Saturday (one I need to get the day she is discharged because it is only good for 14 days from the day it is mixed). I've learned how to give her all of her meds, including her lovenox injections that she gets 2x/day. I've watched the g-tube video, and the infant CPR video. Her carseat has been installed in my car for weeks. I am SOOO BEYOND READY to bring my baby home!!!

Yesterday was my first day back to work since 170 days ago, the end of April. It was quite a surreal experience, but went better than I expected because I was terrified to go back :) Trimming dogs faces took me a little longer than it used to but everything else I did pretty quickly and all went well :) I'm only working weekends (all Satudays, and about every other Sunday), so it works out to only 3 days in October, 6 days in November, and I'm working a few extra in December for the holidays so that will be 9 days. Not too bad!

Here are a few Anya pics from the last 2 weeks:

Now I can't wait to take pictures of her at HOME. Unattached from all the wires (respiratory lines & pulse ox). She will have a pulse ox monitor at home, but I only have to spot check her, not leave it on.

1 comment:

  1. All such wonderful, encouraging news! Big sis looks awfully proud in these photos. So glad to hear that all is going so well...hope the transition home is excellent!