Tuesday, September 12, 2006

I can’t believe we did IT!!

What is IT? .........Brian, Kaitlyn and I went camping! If you know us, we used to be very outdoor oriented, and we obviously haven’t been able to with all that’s happened the last year.

Now, keep in mind camping with Kaitlyn wasn’t really the easiest task. We went to Mendocino for 2 nights, it was actually quite chilly there, Mendocino is on the Northern California coast in the redwoods and gets a lot of chilly, damp fog. Brian and some of his firefighter buddies from Lake Tahoe have gone every year and go diving for abalone, crabs and fish.

We brought home Brian’s limit of Abalone that he free dove for and we are actually going to serve them at Kaitlyn’s upcoming 1 year old birthday party on October 1st.

It was beautiful, and so nice to spend some time outdoors. Brian pitched us a tent, we did have running water down the path a ways, as well as bathroom facilities. But this was no easy task, camping with a g-tube fed baby that’s on frozen breast milk. Just to give you an idea, we had to get dry ice to pack enough breast milk to last the trip, we packed syringes, MANY MANY burp clothes (every one we had), medicine, supplies to clean her g-tube site, clothes and blankets (as it was cold and damp), her pack and play, her wedge to sleep upright, a battery charger that runs off a car battery to charge her feeding pump, as well of course food, clothes, camping gear, sleeping stuff for us, abalone diving stuff for Brian.

Kaitlyn really liked the camp fire, but she was really cold the first night, until we better figured out how to manage the overnight feed, and her needing to sleep on a ramp. She was in her pack and play all bundled up the first night, but on the 2nd night, Brian moved to sleep directly on the ground and I slept on a large inflatable mattress with Kaitlyn, there wasn’t enough room for all 3 of us with her ramp and feeding tube. It was the first night I ever slept with her and it was sooo wonderful. Brian enjoyed taking lots of pictures of us in the morning, but didn’t sleep all that well on the hard ground!

Pictures of our camping trip below.....

Lung Function Test Recap…

Last week Kaitlyn was due to have a lung function test.

Well, as our “luck” would have it, it was a continued disaster (remember my scheduling conversation?). We did all the “prep” work to get her ready, keeping her awake, changing her feeding schedule, Brian and I driving together to the appointment so she wo0uldn’t fall asleep on the 20 mile drive to San Francisco. Once we got there, we waited 30 minutes for the Doc to arrive, then became nervous and scared as they sedated Kaitlyn. I hadn’t seen her “out” like that since her G-tube surgery. Just as soon as she was out, they discovered that the software for the intricate machine that is used was malfunctioning, we waited for an hour for the one tech and creator of the equipment (in Michigan) to return his page to fix it, but alas, no call. Finally, Kaitlyn woke up, and that was that. 2.5 hours later, 30 minute drive each way, all the prep time, and now her feeding schedule was way off kilter, and no long test!

We are now tentatively rescheduled to take this test again on Thursday this week, at 8:30 this time, so it will be even tougher to keep her awake.

Today Kaitlyn had an appointment with a new Speech/Feeding Specialist. Kate. She was great!! We are going to give up on trying to spoon feed Kaitlyn baby foods. She doesn’t want anything to do with it anyways, and it’s just reinforcing her oral aversions. Instead, food is going to be a play thing and fun, as opposed to always trying to get her to take in nutrition.

The Therapist was very happy that Kaitlyn actually puts items in her mouth, likes to watch us (her parents) eat, and I was able to have her gnaw on a teething biscuit the other day. No one has ever told me that I could try giving her other food to try….so this was all a glimmer of hope for me. She did indicate that she doesn’t think Kaitlyn is ever going to embrace food until she stops vomiting….Today the therapist played eating while giving Kaitlyn a Sweet Yellow bell pepper, a teething biscuit, and a dried apricot, she also spread out sweet potatoes on her eating tray and made playing games with it. Of course Kaitlyn made quite a mess of everything, but she did put all of the objects into her mouth!!! This isn’t at all for nutrition, It’s for her to stop thinking so negatively of food.

She would like to see us play these food games with her while we are eating our dinner, and if she’s getting her pump feed, to not let her see the pump (put it behind her).

When we left, the therapist said she was very, very pleasantly surprised at how willing Kaitlyn was to put food in her mouth, as many oral averse kids can’t even be in the same room with food! It’s a start.

But we have to figure out her vomiting.

She’s had 3 visits with a cranio sacral OD, but I haven’t seen any improvements so far. ($$$$$) The feeding Therapist suggested another holistic practitioner that helps discover allergies, once again, it’s going to be $$$ but I’m willing to try anything!! It’s very hard for me to work full time with all of Kaitlyn’s non-stop doctor visits. And if I don’t work, (being self-employed) then no income…BUT if we can get her to stop vomiting, to start eating, then I can start working more, so it’s sort of a chicken and egg situation.

That’s about it for this update!

These few pictures of Kaitlyn were at the hospital, waiting for the Doctor

Killing time with Dad

Playing with Dad's necklace from Dominican Republic

Practicing her new sitting skills in Kaitlyn's crib.

Kaitlyn is doing really well with her sitting skills.

Kaitlyn's towel tried hair (and of course her serious face)

Kaitlyn's first teething biscuit yesterday (now this looks like she's really going to town on the biscuit, but it was only for about a minute - but I'll take that minute!!)

We brought back a bag of "Plantitos" (Fried Plantains) from the Dominican Republic, this seems to be Kaitlyn's new favorite play toy.

Camping!!! This is upon first arriving. See the cooler (curtesy of a fabulous mom in Michigan who donated milk), this is frozen milk with dry ice, IV pole in the background.

I don't have a lot of cold weather clothes for Kaitlyn, so here she is wearing a fleece fireman costume that her Grandma Mame got her. Kaitlyn is sitting on my car tailgate next to our friends' son, Connor. When Kaitlyn was born, Conner asked his parents all the time when he could hold her! He was so excited to finally meet baby Kaitlyn.

Our large family tent. The table was my milk defrosting, milk preparation station. I had to walk to the bathroom to get hot water to defrost the milk (or boil water). I brought containers to defrost milk in.

Kaitlyn and mom waking up our 2nd morning

You can get a better perspective here, IV pole, large air mattress, Kaitlyn is on her wedge.

Mom hugging Kaitlyn

Question: what looks out of place in this picture? (think IV pole!)

Very cold morning, (this was the 2nd morning after leaving the tent), Kaitlyn is wearing my down vest, it fit her nicely like a wearable down blanket.

Kaitlyn and our friends' daugter (Jordan, 3 months) in K's pack-n-play

Kaitlyn taking a nap during her morning feed in the woods. She's a true camper! (And I'm a true trouper!)

We actually went down to the beach on our last day, the sun came out for about 5 minutes and I de-layered, but it was very short lived.

Kaitlyn is actually being fed in this picture, I have her feeding pump on my back in a little back-pack. It at least was "easy" to deal with her vomit outside, I could just lean her over onto the ground and have her vomit. It was tough in the tent though.

Brian and his buddy Shawn about to do some scuba diving. They got fish with their spear guns. I don't have pictures of them Abalone diving, as that was done without tanks. it's illegal to get Abalone with scuba gear, you have to hold your breath and go down with fins and a snorkle. We'll be serving Abalone at Kaitlyn's 1st birthday party - what a treat! This water sure was a far cry from the WARM ocean waters we enjoyed in the Dominican. You sure didn't get me in the water!

Connor helping his dad get ready for their COLD dive.


Anonymous said...

Hi- I'm the one who has posted here alot about how my 25 weeker overcame severe reflux (against all doctors' prognostics of many meds and not changing until at least age 2) with energy healing.

I just wanted you to know that there are many different types of healers, and what was effective for us (we did try craniosacral and quantum 1st) was a "lighworker". Basically, they are channeling light/God/whatever into blockages in the body and this is what gave us miraculous results. I still remember how shocked the doctors were when she suddenly stopped all vomiting and needed no meds. She lost her "preemie head" shape too, and they all said they couldn't tell.

Our lady was in Santa Barbara and would come to LA (I hear you...$$$$), but if you are interested, I could call her and get a # for the Bay Area. She is top notch, certified up the yin yang, and all the energy healers go her her (kind of like a doctor's doctor...). Please let me know in a reply and I'll post it, or maybe you can google her and contact yourself. Her name is Kapitula Lloyd. Good luck. -E

liz.mccarthy said...

Hi E, I'd love her info, or if she has any suggestions for here in the Bay can email me with the info if you want, just go to my home page and email me from there:
Thank you!! :)


Shannon said...

You guys absolutely rock for going camping with your amazing daughter. My family loves Mendocino, too...and would spend many weekends at my family cabin there (at least until we moved to Washington).

We took D to a cranial sacral doctor, too because of her brain bleed and while I wish I had seen dramatic results, I didn't. I have seen GREAT results on myofascial releases (cranial sacral work) on her extremities. I think it would be worth taking miss Kaitlyn to an allergist/biofeedback person to see if there are allergies. If you need a recommendation, I know of an absolutely fabulous one in Nevada City. He is also an acupuncturist and a "real" MD.It would be a trek for you guys, but he is absolutely awesome and it could be a nice trip for you. Plus, he works (at least used to) on the weekends.

Take care and good luck! I loved the photos and I'm soooo glad you had a nice time camping! We took D camping once last summer (we didn't make it this summer) and I was amazed with how much stuff we had to bring...and we don't have a feeding pump, etc...

Take care!

Kellie said...

Kaitlyn looks awesome in the new pics. I'm glad you guys had such a great camping trip but are back to warmer weather. It's really encouraging that she did so well in feeding therapy. Putting the foods in her mouth during play is a big step for orally averse kids.

Sorry that the trip to San Fran was a waste. I hope the test goes well tomorrow and Kaitlyn's results are optimal for the upcoming RSV season. Have you heard about Synagis qualification yet? We just heard back that Eli was approved from his second season (thank God) and will start them in a few weeks.

I also wanted to finally tell you how to prime the Zevex bags so there is no air left in them. There are a few different ways to do it but I usually do Eli's like this. First fill the bag like you normally do but try and squeeze out as much air as possible before closing the cap. Then flip the bag upside down so all of the extra air is on top close to the tubing. I trying and manually prime most of the air out by pushing down on the spring valve and squeezing the excess air out until there is just a little bit of air left. Then load the bag and tubing into the pump like you would as usual without hanging the bag upright on the IV pole. Hold the bad upside down again so all of the air sits close to the tubing and hold the prime button down. This will prime/suck all of the excess air out of the bag. Once all of the air is out it will prime as usual with the formula. Then if Kaitlyn wants to play on the floor and not be attached to the IV pole during a feeding, you don't have to worry about the pump falling over and air getting into the line causing the dreaded flow error readings. It becomes a closed system.

It took me 1.5 months of Eli being on 24 hour/day GJ feeds to finally figure this out and it makes things much, much easier. I hope you guys can find a source for Kaitlyn's vomiting soon. She is a dollbaby and is looking so healthy in her pictures. Thanks for sharing her with us.

Anonymous said...

Hi Liz - it's Stephanie from the twins club - we met really briefly at the garage sale and emailed while you were on bedrest. I've been keeping up on your story since last year. I think of you all often and am really just so impressed at how you've handled this incredibly emotional, difficult situation. I have no idea how I would do. I guess you just take one day at a time. Anyway, it sounds like things are going really well -- very impressive that you went camping!

Kristin said...

Whoohooo on the camping. I see you had to result to the same method we did for sleeping, granted not for the same reasons, but ... ya see what I mean about the U-haul? :-) Glad you guys had fun!

Kristin said...

I should learn to proof read before pressing publish... result s/b resort. *mutter*

Kim said...

I am so impressed with you all! Stacey and I used to be avid outdoors people, too, until the babies came. We have tossed around the idea of camping with them, but quickly became overwhelmed at the thought of jugging them both and all their parephrenalia. You've made me want to give it a go, though--if you can do it with freezers full of breastmilk, an IV pole, plus tons of medical supplies and burp cloths, we can certainly do it with a booster seat and a pack 'n' play!