Wednesday, February 01, 2006

Eat Kaitlyn Eat

I've been super busy the last few days, but wanted to post just briefly. I’ve started back at work and have had to figure out how to pump while out and about. I’ve started pumping while driving to and from the NICU. Yes, while driving. I’m sure I’ve received some funny looks if people really “looked”.

I’ve been spending about 6-7 hours a day at the NICU along with working and pumping (total pump time a day= 3 hours or so). Eating and sleeping seem to be loosing out.

Kaitlyn is back in the Transitional NICU room (yeah, so much quieter).

Kaitlyn has not been doing well the last few days, she’s been unusually fussy and for 2 days now has had projectile vomiting. She's never been a fussy baby. She's eating even less or none at all compared to even just a week ago. She's supposed to be getting better, but instead seems to be back-sliding. They have no idea why. Everyone is stumped. Brian and I couldn't be more frustrated.

I’ve been getting a bit teary myself, as she still just isn’t eating. I feel like there is just something I should be doing different and that I’m lacking in motherhood skills because I just can’t get my daughter to eat. She’s now only eating about 10-20 cc’s out of a bottle before she gets royally pissed and just refuses to take any more.

Sorry about the short report, I’m tired, have to pump and am just basically in a downer mood.

Kaitlyn’s birthdays are in a few days. On the 4th she will be actually 4 months old and 1 month old adjusted. She has been in the NICU now for 120 days.

This is not what I expected parenthood to be all about. They say that “Patience” is something that parenthood teaches you. That’s for sure.


Michelle Flannagan said...

Liz- How frustrating. Be assured it has nothing to do with your parenting skills. Feeding difficulties are not uncommon in preemies, with all she's been through, it may be tough for her to "organize" herself to be ready to eat (can you tell I spent a lot of time with feeding therapists? :)) so what comes naturally to other babes, doesn't for her.
We went through the same thing with Anna, it took time and patience, and a lot of tears (from all of us) to get her to eat. Her issue was primarily reflux, but she had difficulties with the organization, and physical strength needed to eat correctly.
She will "get" it, don't blame yourself! Michelle

Billie said...

So sorry you are having a hard time right now. The pumping is SO hard and draining, but at the same time comforting, because it helps to feel like you are contributing something toward helping your baby. It really is the only thing you can do. I had so much guilt all the time over everything...still do. I think what you are feeling is very normal, although knowing that really doesn't make it much easier. 120 days is a very long time. Especially when you don't know how much more you will have to endure. You are in my thoughts.

Sarah said...

oyvey... I'm so sorry that things aren't improving as quickly as anyone would like... does your NICU have a feeding therapist or an OT on staff? They might be able to give you some suggestions that will help with the feedings, in conjunction with the doctors. I don't remember - has Kaitlyn been diagnosed with reflux? The projectile vominting can certainly be a sign of it...

Hang in there, all of you! We're all pulling for you. said...

Hi Liz -

I read your blog eveyday and have been rooting for Kaitlyn to come home. I feel your sadness today as I read your post. I was also goingto ask if she diagonsed with Refulx. My little guy would do the same thing while feeding. i just wanted to also mention the reflux. I hope that things get better soon. Your mothehood skills are just fine. Lets see some man figure out how to drive and pump. You go girl! I lived two hours away from our nicu so I did the pumping in the car too but always as a passanger.
Prayers all the way from Quebec.
Asha- our 31 weeker twin lost at 16 weeks
Phoenix our 29 weeker

julie deruvo said...

Oh Liz,
I am so sorry you are going through another rough spell -- with good reason! Poor Kaitlyn (poor all of you!) she is probably getting tired of being in the NICU as much as you guys are ! If she could only understand that there is just the one last thing that she needs to do before she can come home! ugh!

As I read your post, I also thought of reflux -- there might be something to it. Another thought, although unlikely is maybe she is allergic to your milk. This happened to my cousin's baby. It would be soo disappointing if this was the case since you have done an INCREDIBLE job pumping for four months straight! Just think of the $$$ you could make if you sold all that milk, like you had mentioned a few weeks ago. ;)

I am sending you a hug and we all continue to keep you, Brian and "Baby Kaitlyn" in our nightly prayers.

Hugs to you,

Amy said...

Thinking of you all. I'm sorry this has to be so hard. When Kaitlyn is older, you can tell her about the prayers that were said for her from all around the world.

When they did the bronchoscopy, did it show anything that would be causing her to have trouble eating? Also, have they done a 24 hour pH test or a barium swallow test to check for reflux or other digestional problems? I know everyone has their own suggestions, and I'm certainly not medically trained--just drawing on our own experiences.

Bobbie said...

Liz- We have also had the frustration with feeding problems. Hallie started eating less and less after about a month of being home. She is now on reflux meds. About 3 months after being home she had to get a G button, it isnt near as bad as it seems. She is doing much better and after 6 months on the button, she has now started taking about 70% of her feeds by mouth. Preemie life is so stressful, we are still waiting for it to ease up! You are doing a great job on pumping, even in the car!!! She will get it or somehow yall will find another method for her to eat, she will be home before you know it. Good luck

Anonymous said...

Hi- I agree with everyone else about reflux. My 25 weeker started having it right before we were going home- it didn't show up until the feeds increased.

If the Zantac isn't making a difference you might want to try formula. I know it sounds crazy, but the ones with protein broken down (like Nestle Good Start) can really help with digestion. -E