Thursday, April 17, 2008

April Update

Kaitlyn had Bronchitis, but some serious anti-biotics helped take care of it. (thankfully). She still has a bit of a runny nose, but is now sounding much better (meaning, no more breathing treatments). Her skin rash (eczema?) also seems to have cleared up (using cremes and such) not sure really what caused it, maybe it was the goats milk or the soy milk products we were using when we went cow-dairy free.

Kaitlyn's peeling hands

We are back to using the DVD for most of the feeds. We start the feeds without one, and unfortunately you get some of this behavior: (so different than the last video I posted right?)

She is still vomiting too, The other night I was having a really good dinner, nearing the end and she tried to swallow a potato from her potato salad whole (even though it's mashed down) and ended up gagging (normal for her) and emptying her entire stomach and then some. I was so shocked by the size of the vomit, I had to weigh it, it was 175 g....her meals aren't that much, so there was definitely water and food from her previous feed.

poor baby...yes, that's a bowl full of vomit

Dr Patel ( Was here today (her feeding therapist). She was amazed how well Kaitlyn was doing. I don't see as much improvement from day to day, because it's my life sadly, but she kept saying over and over how well she was doing.

Here's the best news of all, we charted Kaitlyn's weight (not a lot the last 4 months) but she's still right on her own little curve on the chart, but she's one active little girl and I was very tiny as a baby also. So we decided to DC the night tube feeds! Do you know what that means? It means my daughter will be eating 100% orally for the first time EVER. We are not increasing the amount she takes in during the day (there is no way she could tolerate it), but the night feeds have supposed to have been for supplementing what she looses when she vomits. We'll try it for month, closely watching her weight to see how she does.

What this means: I can sit on the couch like a "normal" parent once she goes to bed. I don't have to prepare and make her Blended Diet, I don't have to get up every 20-30 minutes to push in a syringe of food into her belly, I don't have to wash the syringes, flush the tubing, ugggghhh, I can't tell you how great this is going to be for us! I can't wait!

We had a bout of incredible weather last weekend (it was nearing 90) and Kaitlyn and I went to the beach (Dad was out of town for a week) and we had a blast, (excepting of course that she vomited at the beach, and I longingly watched other toddlers sitting nearby nicely eating their food and was wracked with a bit of jealousy). Kaitlyn also did not like getting dirty, she wanted to leave not long after we got there in fact, which sucked as it's an hour drive from my house. But Mom sure enjoyed the sunshine and Kaitlyn loved putting her feet in the ocean (even though it was freezing).


I'm 21 weeks as of yesterday (5months 1 week). My next ultra sound is next week to see if possibly hopefully my planctia previa may have moved. I feel great! Just worried. I've grown a lot all of a sudden!

Brian is quite sick sadly. He was out of town for a week, with his newly finished four-wheeler (He had a great time and I was so happy for him, especially that it's finished). He went to work the day after he got home and has been in bed since he got off work yesterday. He feels horrible! Hoping that Kaitlyn, myself and baby boy don't get it!

10pm update: first night of no tube feeding - WOW, it feels so strange! I'm really enjoying this! But Kaitlyn did just have a weird crying/moaning/trashing bit in her sleep, this is her first NIGHT without food! Wonder if it's related?


Maryam's Mommy said...

I can't wait to not have to tube feed Maryam! That is a dream that I hope will come true real soon! I could not be happier for you. Congratulations! Enjoy the world of "normal!" Can't wait to hear how that feels! ;)

Laura said...

our first night without a tube feeding was also the first time little man experienced real hunger. he was not happy! still, it is a huge step forward in the right direction for your sweet girl. hang in there.
i recently shared my own experience with a reporter as she was interviewing me about blogging and what got me started. it seems like forever and a day since i was living with the vomit, the tube feedings, flushing, blending and all that comes with the life of raising a tube-fed child. i am so thankful for the blog where i poured my heart out and met folks living the same life. in that sense, we are so fortunate. can you imagine how much more isolated we would feel?
it sounds like pg #2 is progressing well. good luck with the next US.
take care.
ps: LOVE kaitlyn's glasses!

Kristina said...

I JUST stop giving Anastasia her dream feed (night time bottle, where I hold her the whole time). It's been SO FREEING, so I know what you mean about Kaitlyn's nighttime feed!

I'm sorry to hear she's still vomiting. Anastasia is prone to vomiting, too, although not nearly to the degree Kaitlyn is. It has gotten better with time, so hopefully that will be the same with Kaitlyn, too.


Therese said...

Wow! 100% oral feeds! Congratulations! We're still in experiencing some oral aversion where Kiera won't even let you get near hear with a spoon. I can't wait till I can get her to eat even 1 full meal! It's so hard for other mothers to understand what a big deal the feeding issues are, more than any of the other health problems. I enjoyed your blog. Thanks for sharing. Good luck with the feeds, and congrats on your baby on the way. We had to go the infertility route for 2 years before Kiera. She was a 5th try at IUI.
mother to Kiera, 28 wkr, 1.5 lbs
born 8/12/06, 514 days in NICU/PICU

Shannon and Carey said...

So glad for no more night feeding. Sitting here feeling bad for not even knowing what you go through. I will never complain about washing sippy cups/bottles! Kaityln sure looks cute in her little swimmers. What a beautiful day......just mom and daughter. Glad you are feeling good.
Shannon in Austin

23wktwinsmommy said...

Kaitlyn is too cute! Best of luck with 100% oral feeding. The video really gives us an idea of what you go through. God Bless you!
By the way, my Serena sounds JUST like Kaitlyn when she talks! Especially the "buh bye." The cry is even similar. (S has a paralyzed cord as well.)