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Sunday, September 09, 2007

Feeding Set-backs

I wish I could post that feeding has been going well, but sadly, Kaitlyn has been vomiting a lot again. At least 2 times a day, sometimes even more.

Our feeding therapist has been here now 3 times (for the first session where we had incredible successes) but the last 2 sessions haven't gone as well. Kaitlyn did SO WELL with starting to feed (with purees) that I was just convinced that that we'd be done with the tube in a few more visits.

We've been working on chewing. Boy. This isn't easy. We had to teach Kaitlyn how to bite on a chew stick at every feed. We also had to put food onto Kaitlyn's back teeth, but she either vomited/gaged, or bit down on our finger HARD with her front teeth. Her bad behavior really kicked in then (I'd guess I would too if you put something in my mouth that made me vomit and gag) and refused to let us put the food in.

For 1.5 weeks it was horrible She was vomiting 4 times every chew session, and then would still often vomit with food. (We increased the volume of purees at each food). 5 times a day, Each feed was taking 5-10 minutes to prep the food (not counting the cooking/freezing of the food), 20-30 minutes for each session, cleaning up vomit. 5 times a day.


Dr Patel told us to stop and wait for the next visit. We did continue to work on the chew stick, and Kaitlyn's back teeth chewing did improve, but she obviously had no idea what to do when any type of food entered her mouth (besides purees).


Feeding therapy continued this last week. It was really tough. I started crying at one point. I was so frustrated by what was being asked of me, and the progress was so painfully slow. This new session didn't seem all that much different than the previous session, and now I'm back to waiting for another month for the next session.

Don't get me wrong. I'm sooo thankful for Dr Patel and still 100% believe in the program. But this is really, really hard. 2 months ago Kaitlyn wasn't eating ANYTHING orally, and she is now fed 80% by mouth. But moving on to chewing seems to be like climbing Everest. (fellow feeding disorder children's moms have emailed me saying that chewing was very hard for their children to over come also). It still doesn't make this easy.

My fellow blog mom/preemie friend Kim emailed me during this. and I let her know I was having a really horrible day. Here was her reply to me. I thought it so perfectly explained my feelings that I asked her if I could post it. When I received it the tears rolled down my cheek. Thank you Kim. And on top of that just yesterday Kim had sent me (even before this happened) a new lead-free bib to catch vomit! it's great. Thank you Kim - it's amazing how close you can become to someone you've never even met in person!...

Liz,
I am so sorry. Now, please don't mistake my leaving Kaitlyn's suffering out of this email as me not caring about her. I care about her *more* than I care about any other kid that I have never met (that didn't sound right, but you know what I mean--I care about her a lot), but I want to focus on you for a second. Yes, it is horrible for Kaitlyn--we all know that, but does anyone ever take the time to say, "You know what, this REALLY sucks for Liz" ??
This is HORRIBLE. The fact that you have spent three-quarters of the last two years cleaning up vomit and worrying about every single calorie is mind-boggling to someone like me who has never had to do it (not to mention the fact that you spent the first quarter of your kid's life watching her through the portholes of an isolette). The fact that you couldn't ever just make up a bottle for your daughter, that you could never just pick her up in a half-asleep state and put her to your breast, the fact that you could never just take a travel packet of Enfamil with you to the park and spend hours there, sucks.
I can't imagine what it is like to spend the majority of your day making food, analyzing consistency/lumps/purees, filling syringes, struggling with tubing. It isn't fair that you have to hook a tube up to your daughter's stomach, that you can't even relax at night and zonk out on the couch in front of Dr. 90210 or some equally useless television show and just unwind, decompress, and that you have to drag your exhausted self off the couch every hour to push more food directly into your kid's stomach because she can't freaking eat it on her own.
It isn't fair that you have been completely robbed of the normal infant experience (I won't even get into the unfairness of losing a child--that is a whole separate email), that even if you *do* have another baby, that you will never ever be able to have that bringing-home-your-first-baby healthy kid experience.
This is awful for you. It isn't right that you have to spend hours on the phone with insurance companies. It isn't right that no doctors can tell you what makes your kid so sick all the time. It isn't right that you had to spend hours/days/weeks hooked up to a breastpump, then to have to have breastmilk shipped from all over the country just to feed your child.
Feeding a kid should be an enjoyable experience for the parents and the baby--it isn't right to ask a parent to inflict pain on their own kid, push tubes down her nose, to force their kid to do something she doesn't want to do. It isn't fair to put you in that position. Or, at least, it isn't fair to put you in that position and not give you the appropriately qualified help to deal with it.
It isn't fair that you have to do this every fucking day of your life and that you never ever get a break (except for that brief respite when you went to the Dominican, but come on, that's not *nearly* enough!).
It sucks sucks sucks. It's not fair not fair not fair. And it is okay for you to be angry. You wouldn't be a bad mother for being angry once in a while. And you aren't a bad mother for not wanting to deal with this anymore. And you aren't a bitch for arguing with Patel's assistant. You know your kid best and you shouldn't have to argue about what she does/doesn't like, what she can/can not do, etc. Your word should be gospel because you are the kid's mother, for crying out loud! You know your daughter better than anyone. They don't spend nearly every waking second with your child--you do. They didn't lie in bed trying desperately to keep her in utero for ten weeks. They didn't spend hour upon hour in the NICU pacing, worrying, praying. They traveled the thousands of miles back and forth on San Francisco's road to bring her to doctor's appointments. They don't clean up her vomit. They will never know what it is really like and they should respect the fact that you do.
Nothing about this is fair. And I wish I could snap my fingers and make it all better for you.
You know, I was going to put some happy stuff in this too--something about how you are so strong and so amazing, but you know what, I am going to leave that out because you deserve some time to be UNstrong, to be UNamazing. You deserve to let your guard down, to cry, to scream, to be pissed off. You don't always need to be the stoic, noble mother. You can let yourself be human and breakdown once in a while. You've certainly earned the right to it.
Liz, if there is ever anything at all that I can do, do NOT hesitate to ask.
Kim
ps. Hopefully this email doesn't piss you off more. My intent is just to give you the acknowledgement that you deserve--to give you permission to be angry/resentful/whatever, because I don't know that anyone ever gives you that permission and you deserve it. Many hugs to you.

14 comments:

Sarah said...

I want to cry. I *am* crying. I've been following your blog forever - when I was pregnant, I offered to donate breastmilk... My daughter is now 6 months old. She has dysphagia, and failure to thrive, and silent reflux. Each calorie that goes in is a struggle. The doctors have accused me of *starving my child*. We've had two swallow studies, an upper gi, and endoscope with biopsies... And still they tell me that it must be something I"m doing. And it does suck. I can't imagine what you go through.

Anonymous said...

Boy, your friend, Kim, hit the nail on the head. I hope you are able to take some daydream minutes every day to have those thoughts. It's so ok and so healthy.

Thinking of you, Maria K.

Alisa said...

Liz,
I know you have tried everything so it's probably insulting that I suggest something regarding food. My daughter threw up like your Kaitlyn and we had test after test done. We had upper GI's, gastric emptying studies done etc. I simply changed her formula to soy and she quit vomiting. I spent aloto of money when the problem with my daughter was possibly an allergy related problem. She may have been sensitive to the protein breakdown of the formula I had her on previously or the milk based formulas. I am not even sure if you still do "formula". We did the go and grow (Similac Advance TWO, SOY) and now she is on Bright Beginnings Soy pediatric drink. Maybe just try it ... the bright beginnings is concentrate so there is little preparation and it's already 30 calories. You don't have to doctor it up at all. It's for kids up to ten years old even so she will grow and gain weight on it. I thought this might help. My thoughts are with you. My daughter still has her mic-key button too (two this month). She's eating better so there is hope for Kaitlyn!!
hugs,
Alisa Parker, Columbus Oh

skeybunny said...

Hi Liz,

I don't have anything more to add...Kim wrote a great email. It's so frustrating when you finally start a therapy that has been touted as "the cure" for another child, and yours doesn't respond nearly as well. I'm so cynacle now--I just figure whatever new therapy or treatment isn't really going to change anything much, so then when there is a little improvement it seems worthwile.

Hugs,
Sarah (mom to Evan, 2 years old, CHARGE Syndrome)

abby said...

Liz,

Big hugs to you. Kim is right: this so sucks for you. You are the best mom in the universe, but you need to catch a break now and then too, and if the break isn't there to catch, then at least be ablet to sit down at the end of the day and tell yourself that it is okay that you are human and that you can't remain strong all of the time. That, and a nice glass of wine (I wish I could send you that, but let's face it, you have much better wine in CA than I do in PA) and maybe a good long sleep (can someone take over the night feeds now and then?) would at least help provide a tiny bit of respite.

Anonymous said...

Liz, I just read your blog and my heart breaks for all of you. Katie has never been an unhappy baby and it's just not fair to see her so unhappy. You and Brian have been the best parents and it's time for happy toddler fun not this. I am so sorry. I get so frustrated with modern medicine why someone can't make this better for her.
Corinne (Katie's grama)

BusyLizzyMom said...

Liz,
Kim couldn't be more right in her e-mail, what you are going through really does suck. It must be so heartwrenching to have to clean up all the hard work Kaitlyn and you have done off the floor. I hope things start to get better for you and we can see another happy and excited e-mail from you talking of all the success you are having.
Angi (mom to Elizabeth-Ann)

Anonymous said...

You don't know me, but I found your blog while looking for other micro preemie sites. Mine was born at 1.b 6 oz, and is now almost 6 months old. We aren't to solids yet, but we've struggled trying to keep calories in. I know we've still been lucky, though. Anyhow, thanks for sharing your story, I wish I had found your blog earlier. Hang in there. Our babies have been through a lot, they'll make it through this, too.

Jessica Stembridge
http://stembridgefamily.blogspot.com

Laura said...

I wish your family the best. My grandmother was a caregiver for several years for my grandfather who had alzheimer's and it aged her a great deal. Nights with little sleep for several years on end takes its toll. There were very few people who helped my grandmother or gave her a break. Often people forget that it is not just the individual with health problems who suffers, but the caregiver as well.

Anonymous said...

I hate to read the posts in which you criticize yourself. I am never quite sure what to say or how to convey to you that even I, am mere lurker on your blog, can see from 3,000 miles away that you are a world-class mother doing a truly super-human job meeting and exceeding Kaitlyn's needs. I only hope I would do half of what you've done were I in your shoes but I have my doubts. Anyway, I think that Kim's email said it perfectly. You have totally earned the right to all of your feelings about this whole bad situation. And also the right to pat yourself on the back and feel great about your amazing accomplishments as a mom.

dcj said...

Hi Liz,

I'm sorry you're so frustrated and upset. Trying to teach what seems like a simple task is a total beatinig sometimes (ok, most of the time). I wish I had the magic solution but I don't because we're trying to find it, too.

The best advice I can offer right now is to prepare for good and bad meals. Just like in the NICU, try to take everything a step at a time. Of course, that doesn't mean I don't get frustrated, mad, sad, cranky, etc. Hang in there.

Carrie

Special Survivors said...

Liz,

I'm so sorry for the rough time you AND your family are experiencing. Kim is absolutely right...this sucks. My little guy has been tube fed since birth, and we haven't attempted any aggressive feeding therapy yet (he'll be 4 in November).

Be gentle with yourself. You have devoted your life to your daughter, and you deserve some "down" time.

Hugs,
Heesun

Anonymous said...

This was agreat email!!! I know how strong you are and how stoic, but I am glas that Kim "gave you permission to feel all the things that you do but don't feel that you should. I also worry about you and Brian because this puts an incredible amount of strain on the couple!! Having a regular baby is difficult on a relationship. Having a special needs child requires a special needs relationahip. Y'all are in my thoughts!

Family said...

I feel for you! I am praying for your daughter and my heart goes out to you and your family! I stumbled on the site (and will visit frequentlly) trying to find information on upper GI's for my son 28 days old in NICU. Born at 28 weeks he is not tolerating his feedings. . .challenging times, keep persevering!! www.twins2008.blogspot.com