A's Weight Chart the past week...

13.7
13.9
13.6
14.1
14.6

Thankful for the slow day.

New onesies from their cousin "Aunt Nano"

Being the weekend that are not many changes/news to report. We've had no test and are just holding our own with NG feedings every three hours and eating whatever else she wants. The grandparents and other dear family members have been to visit, and the twins got to nap together!

Bikers for Christ also came by today. Every year they bring toys to all the children. They gave J and A an elephant and a teddy bear. Last year she was in the NICU and didn't get one because they couldn't come there.

And to really embarrass her, A doing her raspberry

Test, Test and More Test.

Today has been a day of more test. Including NG tube feedings every 3 hours and blood work at 4am. (Why do they always do blood work at 4am?!) Genetics has more blood drawn at 2 this afternoon for more test.

She ate some oatmeal, waffles and strawberries. Not a lot, but better than she had been. She also drank 65ml so they did not have to NG that. However, they were suppose to and let her drink something else before hand (she's on regular Predisure via NG and 1.5 via bottle).

For lunch she was on NPO because they do not want her to eat before her swallow test. OT said that she had a good gag reflex. Her swallow test went great overall. She does have trouble when eating solids. They get lodged in the back of her throat, but with OT that should resolve itself.

A also apparently has a UTI. And has had it since we were released last time two weeks ago. They did a test and it came back positive (I has seen blood in her urine) however they said it was a false positive and did not follow up. Ask me how upset I am with this hospital!! She was probably throwing up because of this and is prone to UTIs and they did NOT follow up. I am so glad that while we are on the same floor she has a different team.

We'll be here until at least Wednesday it looks like.


*NOTE: please forgive sentences and tense changes. I write this as she is napping throughout the day and as things are fresh on my mind.

Day of test

Worn out from all the poking and prodding!

A had a upper GI test done this afternoon to test for reflux. She passed but they put a NG tube down her nose. This is the same feeding tube she had in KS and she will get a small amount every 3 hours. If she tolerates this and gains weight they will do the G Tube probably Monday.

Genetics also came by. They are going to do lots of test on her to see if we are missing something bigger, and we will know in 3-4 weeks. I don't think there is anything to worry about. Her amnio and another chromosome test came back great. I just don't think she is getting the calories she needs and the Gtube will help that.

J visiting his sister

I do feel bad at times that A seems to get more attention than J does. He doesn't, but A is a little more high maintenance than J is and things change a lot faster with her. I love my little man and beyond blessed with him. Not a day goes by that I am not laughing at something he does. Besides having half his teeth in and saying uh-oh and telling the dogs to go out or to their room (I kid you not!) he has started saying chicka-chicka-chicka. Maybe he is trying to say chuga-chuga-chuga like on the train sound...

Here we go again

Playing peek-a-boo with her pink ribbon blanket 

We were admitted to a room last night finally about 9. A was wired and crawling all over the bed. Around 11:30 they took us to xray to see if they could see any blockages that were causing the vomiting. She was then given an iv, blood work, and a failed catheter attempt. We get to bed about 2am, however, they came at 3 to try the catheter again to check for an uti and at 4am to do more blood work. I did manage 37 ml of fluids and a few bites of pancakes and hash brown down her this morning.

Have not meet with the doctors yet, but I'm not leaving until we get answers this time. I do think that they are leaning more towards the Gtube like I mentioned on Monday,so maybe this is a blessing in disguise.

Gotcha Day

Taken as we were getting them ready to leave KC, KS

A year ago today, C and I went to court to legally make our two little angels ours. They had been ours from the moment they were born, but this made it official. Afterwards, we feed them and hit the road entering Missouri as fast as we could and hightailing it home. They were so tiny and perfect and continue to be. We had a picture taken with the judge, but it is on one of my dead computers and as soon as I retrieve it, it will be post.

I have also noticed that October and November of last year had no post. A was in the NICU and spent a lot of time going there and back. Regret nothing was documented except maybe on fb...

*Note, the straps look loose, but I promise they were not when we drove off.

GI issues

A eating lunch

I just got back from the doctor with A. She has lost 9 oz and still spitting/throwing up. This is mainly due to post-nasal drip so the doctor has her on Zyrtec and reflux meds. I also kept her in her car seat and propped her bottle up on her pillow pet because she can be a bit lazy in that area. The doctor is talking about having to do a G tube and is sending us to a GI doctor next Tuesday. She is not thriving and has also been the fussiest of fussy eaters. Keep the prayers coming for my tiny angel.

And so J doesn't go all "Marsha, Marsha, Marsha" on us for all the A updates: He is his usual sunny self and getting better every day. I sang This Little Light of Mine to them this morning and he laughed and danced. Love it!