A little helping hand from Kaitlyn's nurse to help her modeling her new clothes. It's a little big still! Where the snaps are are supposed to be over her bottom, it's now more like a dress!
Miss Kaitlyn wasn't a big fan of the bib! yes, she does cry, you just can't hear her. She was hungry. Feeding her right after this you would think that she would take her whole feed. But, as usual, she took about 15 cc's (30 is an ounce) then made it clear that she was done. Soooo frustrating.
A few days ago, Kaitlyn did great with her first tummy time! Look how strong her head and arms are already. I wish she was home. My daughter is "growing up" in the hospital.
More tummy time. The white tube is Kaitlyn's NG feeding tube. You can see the orange cap - that is where the milk goes in. Gravity feeds it - you have to hold the milk above her so it will be pulled into her stomach.
A proud pappa smiling at his big girl! 
Kaitlyn giving mom a big hug. Both of her arms are spread out around me. This is how I spend MANY, MANY hours of my time. With Kaitlyn sound asleep in my arms. For example, I was with Kaitlyn yesterday for 7 hours, and saw about 5 minutes of her awake. Today when I showed up, I discovered her sound asleep after she had been awake for the previous 3 hours!!!! ugggh. I want her to come home so I can be with her when she's awake.
I'll update more on Kaitlyn's eating progress soon, (I'm too tired to do it now), but the short version is that her projectile vomiting seems to have stopped, it MAY have been caused by her NG (nasal-gastric) tube being in one nostril vs the other. Once it was switched back her new fussiness and projectile vomiting seems to have stopped.
All of Kaitlyn's tests so far have shown that she doesn't have reflux (she's had swollow tests as well as PH tests), but they have decided to put her on reflux meds anyways.
For the first time today I went on a real walk. I decided to leave the hospital after discovering that Kaitlyn had been awake for hours before I got there, knowing that it was likely that she wouldn't wake until late tonight, so I decided to drive down to Ocean Beach in San Francisco and go on a walk. When I was there I saw a few friends playing beach ultimate, I watched for a while and chatted with them. It was strange for people to ask, "wow, where have you been?" It was all very surreal - realizing that I haven't really had a "normal" life since July, when I went on bed rest. July! it's now February. That's 7 months, going on 8. My entire life has been on hold so that I can be a parent to my little girl.
I went on an hour walk and got to watch the sunset, it was very windy but it felt great to be outside. I remember those long 3 months of lying in bed just wishing to be outside. Now that I could be outside, I've instead spent every day driving to and from the hospital. Over 120 days.
Eat Kaitlyn Eat! We are going to have a difficult road ahead of us with Kaitlyn's eating.
And, if you read this far, I'll let you know a secret - we were due to go home the first part of next week (on 2/7) . BUT with her projectile vomiting, we are back again to figuring out what is going on. That's why I've been extra disappointed this week. The plan was to send us home with her NG tube, but now they are really, really pushing us to have a G-tube installed. A G-tube is inserted with surgery, directly into her stomach.
6 comments:
Of COURSE I was still reading at the end, and I could "feel" your disappointment. I got chills when I read that. I'm sorry you aren't getting to bring her home next week.
Liz- I'm feeling your excitement as the countdown to K's homecoming begins (though I know it's frustrating to have to postpone the date a bit). Just my 2 cents on the feeding...we WISH we had gone with the g-tube much earlier. The older the baby gets, the more difficult the NG becomes (pulling it out, aggravating reflux). It took us forever to decide to do Halle's g-tube and we both think that her problems would not be as severe if we had done it right away. Either way, we're pulling for her to come home soon!!
I have to agree with jp on this one. The Gtube is a lot easier then the NG tube. We had both with our daughter. The G tube is a lot less tramatic for the babies, in our opinion. The G tube isnt near as bad as it seems. FYI- the dr can place the Button in first without even having to have the tube , that is the way to go!!
Liz- what a cute photo, I love the onsie dress! I wish Miss Kaitlyn would have cooperated on the homecoming date.
As far a the G-Tube goes,it will help her gain weight, Anna had a J-tube( placed at the jejeunostum -- check my spelling :) ) because of her reflux, the G wouldn't work. It takes some getting used to cleaning, and taking care of it, but you get used to it. I agree with JP, I wish we had done it sooner, it may have helped Anna gain quicker. We waited until she was 8 months, and at that time she was only 10 lbs (after being 2lbs at birth).
It was a tough reality to face, that we couldn't help her gain weight, that we needed help, but after a few months, continuing to work with her feeding specialists, she was eating, and getting J tube feeds at night, and gained strength(which she never lacked) and weight.
Hang in there, go Kaitlyn go!!!!
Michelle
http://www.kidswithtubes.org/webnews1_1.PDF
here's a link to a group we joined, it's an article about the decision to place a feeding tube.
Glad to know Kaitlyn was cheering for the Steelers! What a great outfit and she looks like a real Steeler fan---I know her Daddy was proud! Nancy
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