Friday, August 31, 2007



That’s how I feel. I feel this way all the time. Is this just motherhood I ask? I don’t know. I have been so fortunate to meet so many other people who have reached out to support us, but I sometimes feel lost. I can’t seem to ever get caught up with all that’s on my to-do list. And of course the most important is love and caring of Kaitlyn. You can’t even imagine my personal email in-box.

Here are some updates:

We went on vacation for 10 days the begging part of August. We flew to Buffalo NY and then drove to Lake Chautauqua to visit my in-laws for 10 days. Just preparing for the flight took a whole wee. Between doctor letters for all of Kaitlyn’s feeding supplies, calling the TSA to see what I could take on the plane. Wow.

I dreaded the flight. Kaitlyn is VERY active. We were hoping and praying that we would have an empty seat next to us. We were very lucky for the long portion of the flight, both ways; we got one of the few empty seats on the plane. But not for the short leg between Oakland and Vegas. That “quick” trip was a bit of nightmare, I can’t even think of what it would have been like to hold Kaitlyn for the 4 hour leg across country.

We didn’t feed her much on the plane, for fear of vomit (think back to high-altitude feeding in Tahoe).

Once we were on vacation, we had a wonderful time. Kaitlyn got to spend a lot of time with her Cousin Stella, who is a few months younger than Kaitlyn’s adjusted age. Talk about polar opposite’s Stella has to be one of the biggest eaters I’ve ever met, and Kaitlyn – well you know. Stella would wake up first thing in the morning wanting food, going to be wanting food. She even learned that when we pulled out Kaitlyn’s syringes it meant food.

We had a great time. I even got to go water skiing which I haven’t done for years. It was wonderful to spend time with Brian’s family. I wish we didn’t live so far away. We stayed at: The Chautauqua Institution They have a summer home there. While there I got to listen to Sandra Day O’connor, Judy Collins, a Symphony, a ballet, other lectures and much much more. It was wonderful to get to see entertainment even with a toddler! What a treat.

Sadly, while we were there, Kaitlyn’s vomiting increased tremendously. Not sure why. The consistency of the food may have been different, so we had to revert to giving her more by tube.

After returning home the vomiting decreased, but she is still vomiting a lot. I look back to my earlier posts, where she went 3 days without vomiting! That seems like a life-time ago. She is vomiting now at least 2x daily. It’s very, very very frustrating.

We also started with Dr Patel working with Chewing last week. Sadly, it wasn’t as successful as the purees have been and it’s also increased the vomiting. Kaitlyn’s gag reflex is very strong. So she either gags and vomits when you put food into her mouth, or she hides it underneath her tongue. Our protocols include putting a small piece of food (a meltable solid) on her molars and “help” her chew by opening and closing her jaw. When she doesn’t chew, you have to go back in her mouth with your finger and scoop up the food and put it back on her back teeth. As poor as she is at chewing, she is VERY good at biting especially with her front teeth. Oh my gosh. I think my finger is permanently injured from her bites.

I now have begun to absolutely DREAD the feeds. We have to do this 5 times a day. Each feed is taking 30 minutes. She cries. Kaitlyn never cries. My pooor nanny is at her wits end for making Kaitlyn cry. She gags, she vomits. It’s really quite horrible.

The food preparation is also tough. She has 7 different daily meal plans. All with pureed food. We try to prepare some of it in advance and freeze it, but just making sure you have everything on hand is hard. Our freezer is full now with zip lock bags of ounce size frozen purees. It’s hard to find the bag with the correct food on it. Every food needs additives. Things like: sour cream, whipping cream, olive oil, maple syrup, flax seed, vitamins, pro-biotics. So you have to find the right food, (if I have it made in advance), defrost it, add all the additives and then after all this work HOPE AND pray that she will keep the food down so you didn’t do it all for nothing.

The bad behavior started back up again (not with purees though), but she was turning her head and swatting me away when trying to get the food in her mouth. After I reported this back to Dr Patel, she decided to stop all chewing and we are sort of back to square one. We still have Kaitlyn “chew” on a chewy tube but not longer have to try to get her to chew the foods.

On my birthday (yes it was earlier this week on the 25th) I completely lost it. She had just vomited 4 times with ONE feeding session. It was my birthday. I DIDN’T want to be doing this. You know those bibs that are supposed to have lead in them. I’m still using them. They are the only bibs that can catch the vomit easier and wash. I figure, well, she’s not eating the bib (or anything else for that matter)…..If anyone has any other suggestions, I’m certainly open….

OK, the good news is that even with all the vomiting, she continues to eat her purees and drink her milk like a champ. I am so looking into the future, that I have forgotten that 2 months ago she didn’t eat ANYTHING by mouth.


abby said...

Big hugs to you, Liz.

This all sounds so frustrating. I have no advice except to point you back to your own last paragraph in this post. This whole journey seems like such a nightmare sometimes that we get stuck where we are and it seems like we're never making any progress. But then taking a wide-angle view of things, we've all come so far. Kaitlyn most of all---she wasn't eating at all and now is doing great with purees and milk. Hopefully someday Miss K. will do the same with true solids and all of this will seem remote and unfamiliar.

I know that saying this doesn't really help. I hate it when people say to me that "this too shall pass." So I will end my annoying comment with another big hug and a wish that we could do something that really makes a difference to help you guys get through this.

Kim said...

Oh, Liz, I am sorry that you feel like you are back to square one with regards to the feeding and vomit issues. I can't imagine the frustration you are feeling, which must seem all the more cruel coming off of your recent successes. I wish there was something I could do.

Remember that Kaitlyn has always had to do things on her own timeline--even simple things like eating and smiling. But the fact is that she DOES them. Miraculously, things she either isn't supposed to do, or things you think she never will be able to do, she does. It just takes her a little while and she just needs a little more help.

I wish I had some words of wisdom or comfort. Just lots of hugs, and know that I'm thinking about you.

Emily said...

I can totally relate! We just backed off to where we don't even use a chewy tube now in our feeding therapy. Noah took to purees so quickly but chewing is slow going. Our therapist said that the actual chewing is a huge hurdle and once we can get past it the progress will start being evident again. As for the vomiting, it's a constant around here too. We use the disposable "bibsters" a lot of the time (more often since the bib recall). They don't leak and if he vomits the clean up is easy. Because Noah doesn't self feed he tends not to make a mess on the bib unless he vomits so I just set it aside and reuse it at each meal. Hang in there! I'm told someday it might get better...

The Preemie Experiment said...

Hi Liz,

We used cheap bath towels for bibs. We cut a hole in the middle for her head. Once I realized that it meant that I had to slip a yucky towel over her head, I cut the towel from the hole to the closest side and then just put velcro on the edges to keep it closed. It's hard to explain in an email but let me know if it doesn't make sense and I'll try to draw it out and email you.

Happy belated birthday!! I can totally relate to your wanting one day without the puke!

Side note on the chewy tubes... we found that Paige's stomach acid would increase when we used the chewy tubes. It made sense to me since that's how our stomachs work (increase acid production when chewing begins) but the docs didn't believe me. So, we started making sure we fed her something little after the chewing on the tubes so she would not associate the pain of reflux with chewing.



Anonymous said...

hi, liz-- it sounds like youhave made some incredible progress with kaitlyn form just wa few months ago-- she's drinking milk and purees by mouth. it must be incredibly hard when her vomiting escalates after all this progress. i am not sure what work-up you have done for kaitlyn's vominting. i am sure you have gone through it all with GI specialists, feeing therapists and now dr. patel. the only think i can think of, and i am sure this has crossed you mind, is there any way you can take a break from feeding kaitlyn for 1-2 days and let someone else do it. i wonder how she would do if someone else just tried?

Matt & Sara said...

I'm so sorry Liz. All I can say is, I understand, I'm with you in spirit and wish I could do more from Saint Louis. I'm remembering our Georgio's Pizza night with great fondness right now, and wishing there was a girls night on the calendar. I'm sure we could all use a little respite. ("little" being a strong understatement) Hang in there. You're still my hero. ~Sara

liz.mccarthy said...

Thanks everyone for your nice comments and support, and for those that have been in my shoes...what do you when the vomit gets you so dread each meal, and then start thinking "why bother" if she's just going to puke it right back up again anyways.....


Kristin said...

Hey Liz...

Your vacation looks like it was great!

One thing I have learned about the sensory issues is that change..any kind of routine, time, place, people.. throws a HUGE monkey wrench into things.. I've thought about it with respect to Kaitlyn a few times, but was looking for a trend before I commented... You said her vomiting accelerated while you were away, slowed down at home... same thing happened in Tahoe no?
Presleigh was the same while we were on overwhelmed and everything went to shit. Got home, world was good.

So I wonder if perhaps that there needs to be some variety in schedules, and slowly introduce changes.. as possible, perhaps an overnight in a hotel, not far from home, but enough of a change that she is accepting of the changes more easily... Nanny care for her outside the home for a few hours if possible? that kind of thing... We start daycare tomorrow (tuesday).. last week we had a few visits so that she got to get used to it a bit at a time rather than all at once.. so far so good.. we'll see how much of my hair I am pulling out Tuesday night..