A new phase

So we’ve entered a new phase of our lives, River and the family are slowly adjusting. I am slowly adjusting too. At first there was definitely expected upheaval and tears! River is getting to know Patty and actually things are going pretty well. Her appointments have definetly suffered in frequency, PT is about once a month, and feeding therapy will resume this week at about twice a month. Recently she had follow-ups with both Dr. Morris (Neurosurgeon) and Dr. Pickens(GI). First off kudos to Daddy who had to do both of these appointments by Himself!! I was away for 4 days(longest I’ve ever been away from both the kids, mostly River) on a school field trip to Mt. Rainier (I’m in a geology class).

River's understands now what cameras are for!

Dr. Morris: River’s scar recently has “acted up”, not oozing, but swelling and looking gnarly red near the lowest part of the incision. Dr. Morris assured in his most mundane and unexcitable manner that it was stitches working their way out and that maybe we could apply a little bacitracin, but not to be overly concerned. And other than that the appointment was uneventful (from what I heard second hand).

Dr. Pickens and the GI clinic: This turned out to be a very lengthy appointment for Pete and the kids, but he wanted, and so did Dr. P, to be very thorough. We really want to get River off of night feeds. We have, prior to this appointment, feeding her nearly 500 ml at night, and only getting about 600 ml down her during the day. During the day it was blenderized diet(BD), and at night it was a mixture of milk and Organic Pediasmart. The highlights of the appointment were that River is growing great! She’s hovering around the 50th percentile still for weight, which is consistent and they are not concerned about calories. She weighs about 24.25lbs!! And our backs can tell. Pete and the dietician and Dr. P worked out a plan to bump up the daily feelings and Dr. P wants us to give them so her way slower than we have been, he explained that the way we were giving the syringe feeds were much too fast and were actually slowing down her digestion which would explain why it seemed she couldnt hold as much as she should logically be able too. Instead of two 70ml syringes (which we now use the Toomey syringe and it’s way better!) an hour it’ll be three 70ml (or roughly 200ml) an hour and it’ll take 45 minutes to slowly inject them. And do that 4 times a day. It seems like a huge giant change right? It is!! It is really time consuming and has been pretty difficult on all of us. The flip side of that though is that she is getting real food. To make it simpler on everyone we would stick her on a formula and a pump four times a day, in a backpack attached to her. Which is what most people do.

We are torn as to what to ultimately do since this is a huge commitment. We may think of getting a new pump and backpack for her and doing a 50/50 version so as to make it a little easier. The blenderized diet is thick and heavy and doesn’t move through a pump unless really thinned down, then it’s more like a homemade formula and you aren’t getting the benefits of having thick heavy food in your stomach. The thicker it is, the more it actually stays down, and helps with vomiting. We are super reluctant to give her more thinned-down blends. But spending 3 broken up hours a day on pushing a syringe and trying to get a toddler to hold still is pretty challenging as you might imagine. The good news is that 200 ml in an hour, going super slow, seems to be working so far. There has been no increase in vomiting because of it. And now her night feeds, on a good day, are down to about 330ml. And we are hoping to keep up the trend. In 2 months we need to check in with Dr. P and if there is not enough progress he may want to give her more gastric testing (we definitely don’t want this).

Physical therapy this week was a check-up with Jean, and while River’s skills have certainly improved, she is still not walking. And she was extremely uncooperative with us that morning, acting like a typical toddler and giving lots of attitude and independence. We will check in with Jean in another month. Feeding therapy this week, after a short hiatus, with Jennifer was another story. It went fantastic! River was actually interested in the food (of course I fed her less to get her hungry) she cooperated as much as a toddler can, and she discovered a sippy cup(Zo-Li) that she totally loved and drank an ounce from. We were quite encouraged. And of course Mommy went home and ordered a Zo-Li sippy cup off of Amazon.

As far as River’s adjusting to the new life of College Mom, it’s turned out well! Once the initial outrage of me walking out the door or whatnot has passed, she quickly settles down with her surroundings, she’s become more comfortable with Patty, and even Patty’s car. She appears to be connecting well with her new “family members”! With our new hectic schedules and busier lifestyle, this certainly helps to alleviate my emotions!

The NEW formula!!

I’ve been holding back until now to talk about the new formula that we’ve started for River. It’s been a completely amazing discovery for us. But first I have to go back a little bit to explain.

River began throwing up a lot when she was about 3 months old. The doctor’s only explanation was “reflux”. She was diagnosed with GERD. They put her on a PPI (Prevacid) and we began trying new formulas. At the time she was on breastmilk mixed with Neosure formula. Slowly over time my breastmilk supply decreased, and we had to go up on using formula. Her throwing up also got worse. It also caused her oral aversion. After her heart surgery in August, we finally got a long awaited GI consult. He recommended the most hypoallergenic formula, Elecare. They also wanted breastmilk completely removed from her diet, as maybe something in my milk was the culprit for her intolerance. Was it reflux or intolerance? Dr. Pickens has always referred to it as River’s Puzzle. We tried ruling out various things, like they gave her a gastric emptying study (nuclear medicine, horrible horrible test where they fed her radioactive formula and strapped her to a board for an hour). The study came back normal. They gave her a reflux frequency test, which required a tube placed down her nostril, just like the NG tube, which measured how many reflux events occured in a 24 hour period. This test came back without exciting results. She refluxed about 7 times in that 24 hour period, and they were non-acidic which indicated the Prevacid was working. That concluded their tests, and the rest was whatever other pieces of the puzzle that I brought to them. Her vomiting continued, it got a little better, but still a daily event. And multiple times a day if something made her retch, like oral stimulation.

I put my trust in these medical professionals, and I trusted that this was the best formula for her, until recently. Still she was throwing up at least once a day, and ever since getting her g-tube placed was having lots of gas in her tummy, and that would make her throw up too. I went on the hunt for another formula. Our GI doctor and nutritionist gave us Neocate to try as it was the only other formula they had in their case of magic formulas. That turned out even worse. So back to the Elecare. Elecare has also always made her have really runny stools. This always baffled the doc because he said normally it causes constipation. Another little red flag.

ALL powdered formulas on the market are made of corn products: corn syrup, corn starch. And lots of it. I wondered if it was that she was reacting too. We, as a family, usually ban all high fructose corn syrup products and the like. There is one formula out there made of rice syrup. I couldn’t wait to try it!!! Within a day or two of trying it, no vomiting. Less gas. Magic had occurred. But after a few days of trying it, she vomited. I was bummed. And then she got a cold, a bad one, while we were in Utah. This made her throw up A LOT! All the mucus, snot, coughing and sneezing would trigger her sensitive gag reflex. We waited this out with hope. After the cold passed, the vomiting got less and less.

We have had her on this for almost a month now, and her system has changed. She no longer has phantom vomiting episodes. She might spit up on occasion, but it actually looks like spit up, not ounces and ounces of stomach contents. She burps more like normal. If we have to vent her, there is gas in her tummy, but not a lot. And her stomach contents have begun to look like what one would expect, like digestion is taking place. Also not to mention, due to her improvement and some adverse things I’ve learned about PPI’s(Prevacid) I’ve taken her off this acid-blocker medication. PPI’s can cause problems in bone density and bone growth, and one doctor has recently done a study on it adversely affecting growth in babies. SCARY.

Now that it’s been a month I feel free to tell every one that it’s working!! Her poop is even normal!! It’s funny how parents get about poop, but if you are a parent then you know what I mean.

So, last Friday, we had our check-up with the GI Clinic. Dr. Pickens, and Judy the nutritionist. They were both excited to see that River was doing better. I believe they were both taken back a bit by my proactive approach, but screw ’em. I’ve put my trust enough in them only to still not find the answers. I had to find them myself. But none-the-less, they were pleased that River is on the up and up, and they agree that it must have been an intolerance to the corn products. River’s growth stats though were a bit down on the curve then the previous visit. I hope this is just temporary, and maybe due to her throwing up so much for a week when she was sick. We are also beginning to feed her organic food straight into her tube. Once or twice a day I am replacing a formula feeding with a watered down puree (and a scoop of formula) and syringing it into her tube. This way her body can start to eat real food too! So far this has gone really well. We make sure to also let her smell and taste the food we are giving her. Surprisingly the other night I let her sample the spinach & potatoes I was feeding her. To my shock she actually swallowed the little bite without a grimace or a gag! I could cry I’m so happy. And I couldn’t be more thrilled about this company and their formula: http://www.naturesone.com/

Awareness is what’s cool these days

Being an advocate for your child is not a luxury. Although not everyone who has a special needs child is out hitting the streets to raise awareness, we all wish we could. But being an advocate for your child is not just about “raising awareness”, it’s a daily battle to keep up on top of your child’s special needs. You have(emphasis HAVE) to keep up on top of your child’s healthcare team and doctors, you have to make sure they are not forgetting about certain details. You have to make sure they are specializing and tailoring their care based on your child’s specific needs. You have to become educated on all your child’s unique medical conditions. You Have To. That to me is being an advocate. Otherwise you might find your child’s conditions worsening, or falling through the cracks of the medical system. I am an advocate for River and Ewan. But I would also like to go outside of just their needs and help speak for the needs of all children of like conditions. I would love to find unique and creative ways of spreading awareness and raising funding for research. But that requires a whole other level of energy and workload. One day I will be able to do more. But in the meantime I will do what I can.

The week of Feb 6 – 12 was determined to be Feeding Tube Awareness week, it overlaps CHD week.

http://www.feedingtubeawareness.com is a new website devoted to our tubie kids, and formed by tubie parents. IT’S AWESOME. I’m so happy this organization has started, I know it will just grow and grow and grow! I wish to participate, but I feel already that I’m being pulled in different directions! Heart or Tube, Heart or Tube??!?

I love them both. But I feel that my pull towards CHD Advocacy will overrule my activities.

But:

Head, Shoulders, Knees and Toes

Today I’d like to share with you all a little video I made of River’s physical therapy session this week. I have found a whole new way to share information and I’m very excited about it! To review again on the reasons why River is in pt are that she developed torticollus, and motor development delays. Torticollus is a quirky little condition that resulted in her infancy, she came home and we would keep her propped up for her feedings or otherwise the reflux was worse. The boppy was a handy tool, but what I didn’t realize is that she really preferred looking one way, towards the action. I rotated, but not enough. Here’s where my failure and blame comes in! She even has slight plagiocephaly. More fun stuff. This I can definitely take the blame for. Unfortunately I didn’t realize it was occurring until well into its development. Anyway, all of this and she’s in pt and we are working on her strengthening her neck so that she will hold it upright and in alignment. She does actually stay in alignment most of the time, unless she starts to get tired, then the torti neck really shows up!

The new g-tube

River had her g-tube surgery on Monday. Everything went as expected and no problems! Best we could hope for in our daughter’s third surgery.

She is back at home after a 3 day stay in the hospital, which is what they told us would happen. They had to wait til she was up to full feeds (which for her at this weight was 34 ml/hr, 24 hours/day). Her three days at the hospital were like this: Monday, surgery was at 2:30, and she was back in her room with us at 4:30. She slept most of that evening, but was alert on and off and comfortable. By that night she was experiencing lots of discomfort and crying. She was having an itchy reaction to the morphine she had received in epidural form. Her face was driving her nuts. By the middle of the night they had finally given her some benadryl which really helped her calm down, plus demerol for more pain control. The rest of the night was rough for both of us. Tuesday she was much more calm and her pain was well controlled with demerol and tylenol. Daddy spent that night with her and it went great. They started her on a slow drip of pedialite by then, and slowly increased the rate every 4 hours. By 4 pm on Wednesday they started her on formula, Elecare is what she takes, and the drip was started at 10 ml/hr, increased 5 ml every 4 hours until the goal of 34 ml/hr was reached by noon on Thursday. We were out of the hospital by 3pm on Thursday! Her pain is now controlled with just a little bit of tylenol and she is back to her cheerful self and seems to be even happier than before! Probably loving not having the NG tube anymore, as we all are!

She is currently on full vent and continuous feeds all day. We have to vent her and feed her this way for two weeks at least, and slowly compress the feeds over time hoping to get up to bolus feedings again.

Bolus: http://medical-dictionary.thefreedictionary.com/bolus

Hopefully when we see the doctor for her follow up in 2 weeks, we will have compressed her back to bolus feedings, and one continuous feed at night while she sleeps (over around 6 hours). And hopefully she will be able to tolerate less venting in a day. The venting helps gas escape from her stomach and keeps her from retching or vomiting and experiencing pain due to the fresh wound in her abdomen. Here is a picture of her insertion site. The dressing next to it is where a small incision is made so the surgeon can reach the stomach wall, then a needle is used to make the initial hole and then a dilator is used to widen the hole made by the needle, which is the track where the g-tube is placed.

Here is our venting set up for when she is hanging out on the couch with us