3 months of summer gone by…

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Oregon coast, July

It’s been 3 months to the day since I posted, a busy last 3 months! I’ve been suffering from blog-aversion, but I’m going to try to give it a go.

River started off the summer with a new attempt at weaning. After leaving the last GI appointment we went ahead with taking away all tube feedings. We enjoyed a road trip with Grandma and headed to Oregon and Utah. It was So Nice not having to tube feed, it was a relief to think we might be done, although I was skeptical it would last.

As we launched forth into 100F average summer temperatures in the area it became our duty to try and keep her hydrated and healthy and having fun. We went about 4 weeks into this wean before we were forced to begin tube feeding again. We had, what I call, the “dehydration incident summer ’13” happen at a water park. The unforgiving Utah sun sapped little River dry one day even as I did my best to keep her drinking. She experienced terrible stomach cramps, and took naps in between the pain at the park, and that night started having fevers. I began tubing her juice and water that evening, and in a few days we ended up at the ER at Primary Children’s. Although she didn’t continue to suffer from dehydrations symptoms (other than a dark color in her urine and diaper) she had fevers and I was worried about bladder infection. So the hospital wasn’t much help, but they seemed to think she would be fine soon, only testing for a UTI which was negative. If this had been a normal kiddo with no direct port to the stomach, I would have taken her to the ER straight from the water park that day, but knowing I could slowly and surely hydrate her continually at home, I didn’t. I was so bummed about this incident, not for the weaning failure, but that I allowed her to get heat sick and get stuck all day at a stupid water park and experience such discomfort and come close to a serious brush with major dehydration! My son also got sick at with a cough and sore throat also a few days later. I continued to tube feed her from that day, as while we were at the ER I noticed her weight was stagnant, no gain in a month! No good, need to put some weight on my little girl which is what we’ve been working on ever since.

We still had fun adventures and got to travel during that month, yet grateful to leave 100F behind, back in Western Washington where we were occasionally having 85F. When we returned home we also got back on track with potty training, currently doing awesome with that! We’ve kept up about 8-10 oz. of formula tube-fed daily, spread over 2 different times. She is steadily gaining weight again, and currently about 27lbs!

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B-ball at speech therapy

River received several speech therapy sessions this summer with Julie. I feel there has been some improvement since then, River usually speaks in incomplete words, typically missing syllables, and the endings of words. Since ST has begun, she has altered a few of her errors, and has new words now that include an ending sound. Example “Hello Kitty” use to sound like “Eh-Lo-Ti”, has now turned to “eh-lo-ti-Ki-tee”. And “Chip” and “Dip” use to be missing the P sound, but she says them good now! I’m glad we had the few sessions we did as to help her become aware of her speech. Her ST will pick back up at her new preschool, Head Start.

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First day of Preschool!

So on to the big preschool news!! After MUCH paperwork, APPOINTMENTS, and some paperwork, and phone calls, and don’t forget the FRIGGIN’ PAPERWORK, River is enrolled in Head Start! Head Start is a federal pre-school program, typically for low-income families, but they also have spots for therapy kids. River will get weekly ST at the school, as well as being able to attend a half-day great program! Fortunately she does not need to be tube-fed at school. I’m so glad that we are in the position to just feed a few times at home, conveniently, and no strangers have to mess with anything. Of course I had to do a bunch of stuff with the Head Start nurse, and they have an emergency plan in place, but hopefully the school year will go smoothly and her g-tube will be a non-issue.

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Ballet for Tots!

Preschool started this week and she’s attended a few days now. So far she’s doing great, except she melts into tears as soon as I pick her up! But then they tell me how great she did all day.  She is also taking ballet class over at the Y, we started her back in June for a couple times, and now she goes about once a week and loves it! She’s so adorable in her leotards I can’t stand it. She loves playing with her “ballet friends”.

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At the Mended Little Hearts Annual Picnic

We had our 3 month check up with GI and Dr. P. They were happy to see the weight gain she’s made, but of course sorry to hear that the weaning didn’t quite work out. She has reached up to the 8th percentile of BMI…. which is actually a gain on last june’s around 6%. We have some goals to get her growing even more, and we’ve all decided to hold off on any more weaning notions for the time being and revisit it in the spring.

We were able to make it the Mended Little Hearts annual picnic this year! I won’t stop plugging them…. Also we a facebook page now for the group: Mended Little Hearts of Puget Sound

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Oh it’s been a while!

Mama got sucked into the vortex of college and couldn’t get out!!! I’m back, and it’s time for a River Spectacular!!!

Get the sillies out

River is doing fabulous first off! We had our 3-month check up with her GI clinic and she did gain weight, but sneaked down the scale a little bit, now coming in at 7% BMI. But Dr. was assuring and said that this is River’s trend and she still falls within her general curve and not to be worried. He changed out her AMT Mini G-tube button, and River cooperated so amazingly I was wondering who this little girl was. My little girl…not my little baby, anymore. She’s grown up so much this year! She would have normally pitched a huge fit and freak-out session, which is why we switched to changing out her tube usually while she slept. This new AMT is a bit trickier to get in, and I doubt she’d sleep through it like she would the Mic-key. She was uncomfortable, scared, but so brave, and she surprised me! We got the big news too, that if we can manage not to touch her tube for the next 3 months(by that I mean use it for supplementing her) that we may be able to get it out in the fall! This is exciting and scary. So far I haven’t touched that since last week, but I keep wanting to feed her extra! That 7% is bugging me, she was over 10% three months prior. We will just keep taking it day by day as usual. Assessing the situations as they arise.

In other related news, River recently got assessed in the local Childfind, and she has  been approved for preschool starting in the fall, where she will receive speech therapy as well as regular pre-schooling. She has been seeing Julie, her SLP, weekly since about March. Her speech patterns are similar to Ewan’s early errors, but she has caught on that we want her to add sounds, also to improve her volume and clarity. It’s been going really well, but I think it will take time for her to start integrating these improvements in her regular speech. She does excellent during therapy, and daily reminding, but usually doesn’t translate over to her talking. But I predict speech therapy will do it’s job to help her and by the time she hits kindergarten she won’t even need it!

Our “little lady” has also decided that she was ready for the potty, all by herself. Recently she was adamant that she did not want to use it, but she made up her mind and went and got her potty one day about 3 weeks ago. She’s been using it ever since! She is so proud of herself, we even managed to survive camping this week with a travel potty seat! We will be all ready for our summer trip to Utah soon! They will all be blown away by the girl they meet 🙂

Ms. River is a head strong determined little girl who knows what she’s doing….maybe she is ready to let go of the tubie. Am I?

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Summer 2013! Yay it’s here!!

River Turns 3!!

Happy 3rd River B.!!! My sweet child turned three today, and we kept it low key, because low key was all I could handle this week with my down-to-the-wire school work. This year she didn’t cry when we sang happy birthday to her, she just hid her face until we stopped, apparently she doesn’t like the way we sing. But she was enjoying the attention, the cake, the candles(we had to light them a few extra times), the presents. Big Brother was feeling a bit “meh” about this. Maybe next year she’ll get a party! 

Recently Princess River had her Long-Overdue visit with Dr. P at the GI clinic, it took a long time to get them all caught up on River’s tube and oral eating report. I advised them how the Seattle Children’s intensive feeding clinic went and what I think it accomplished(marginal fluid intake increase), and then what we did to get some weight put on her over the winter(lots and lots of tube feeding, and reversal in oral eating), and then how on January 2nd(we stopped tubing her cold turkey), and now what we do(tube feed once every other day 8oz of formula). So we had a lot to talk about! They were pleased(I was trepidatious) with her progress, and actually not too worried about her weight. She came in around 26lbs 7oz. And she sits in the 10th percentile for weight to height ratio. Low, but well enough on the charts to feel good about her health).   Obviously everyone would love to see River with a few extra pounds. She’s about 90cm/3 feet tall, she continues to grow upwards. Her head circumference is in the 3rd percentile, which is usually where it is. So good, at least there have been no dips in progress, just slow and steady. We are pleased that they think what we are doing is good and right and in River’s best interest. Our new goal to try and get her to drink some formula-type drink, like pedisure or the like, which ever one we can get her to like drinking. The hope to wean her onto this and cut out tube feeding any calories at all, just tubing her some water if she needs it. 

ImageWaiting to see Dr. P and the dietician. Also updates is that OT is now complete, I bowed out of it a bit early, but I wasn’t seeing any drastic reason to keep going. River has made a lot of good gross motor control over the last 6 months, and I think with or without OT wouldn’t have mattered much. We will be trading this to start some regular speech therapy with Ewan’s first speech therapist, with Julie. Weird to think that I’m taking her to her brother’s SLP, feeling a little like going back in time, and what it was like to deal with Ewan’s apraxia, and feeling so unsure of his future and who he was underneath that lack of speech. Here we go again, although River is farther ahead of Ewan at the same age in speech abilities, I hope it doesn’t take much to get her speaking better!!! For the first time looking forward to a child therapy. ImageImagePretending to sleep at OTImageBirthday princess

ImageParamount, Seattle, WA, taking her to her first concert: Yo Gabba Gabba!!! 3/2/2013ImageEating Corned Beef on her Saint Patrick’s Day Birthday!!

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Surgery update and weaning

Last Thursday was River’s eyelid surgery, and everything went as expected! Here’s a little timeline:

Jan 16th 10:00pm: Fed River formula, last food she will get until after the surgery.

Jan 17th 8am-11:00am: Try our best to distract River from the fact that she is very hungry and very thirsty, give sips of water. Fasting is terrible for a toddler! Next time, if there’s a next time, only ever take a child to an early morning surgery! Wish I had been thinking ahead when I accepted this date and time.

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Just after check-in

11:30am: Check into Mary Bridge Children’s Hospital/Tacoma General for surgery. Taken to ACU and slowly get prepped. Good news is that we find out they won’t insert an IV into her until after she’s been knocked out from gas! We were highly concerned about the IV causing her problems because she’s very difficult to get one in, runs in the family. We hang out in the room, watch cartoons and color while we are waiting. They give her Versed around 12:15, which will calm her down, and causes an amnesiac effect. We speak to the doctor, Dr. Pratt, who will do the surgery, and basically they explain once she’s ready, he will only work on her for about 4 minutes! They don’t even want us to leave the hospital wing because it’s so quick. The nurse takes River away, who was calm and cooperative by 1:00.

1:1o: Surgery prep & OR.

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Leaving for the OR

2:00: Doctor visits to let us know that everything went great and explains her after care. We are taken back to the recovery room, River is now awake and very unhappy. River was crying and shaking her IV hand all about. She was in pain, and mostly upset by her IV site. She does verbalize that her eye and hand hurt. The nurse asks us if we want to give her painkillers and I say YES. Get her comfortable! So they administer fentanyl and Ibprofen, and in about 10 minutes River is much calmer and starts licking on a popsicle.Photo Jan 17, 2 25 30 PM

2:30: Daddy leaves to go get brother from school, we want him to be here to see River, and all leave the hospital together.

3:00: we are finally moved back to the ACU out of recovery, River is much more comfortable but continues to get upset by the IV in her hand. Her eye is  very swollen, and blood occasionally tears down into her eye, I have to keep dabbing it up. Daddy and brother arrive soon.

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Getting ready to leave the hospital

4:00: we get to check out! River is dressed and ready and so happy to get the IV out.

Home we go, it was an exhausting day, but very worthwhile and we know that in no time River will start feeling better and we will leave this behind us.

Our little girl did amazing, she’s a great patient, and old pro, and our little warrior. Daddy caught a very good picture prior to surgery that really shows how much River’s vision was affected by her Horner’s syndrome and Left Eye Ptosis. It’s not a pretty picture but it really illustrates how important this surgery will be for her. It’s much too soon to tell how her eye looks, it’s still red and swollen, even today, but getting better everyday too!

While waiting for surgery, a good picture of her ptosis
While waiting for surgery, a good picture of her ptosis

And now onto weaning news: Since January 2nd we stopped tube feeding her. Now it’s been going really good! She’s lost a little weight, but not much, and her drinking and eating are going well, but we’ve hit a little plateau. We hope to get it to pick up soon. We’ve had to supplement a few times in the last 19 days, she had a brief gastric bug she caught from brother a week ago, and the fasting with surgery also made me want to supplement. We only supplement at night, about 7oz of formula. And have done that about 5 times since Jan. 2nd. It’s been an amazing accomplishment to go this long and we sure hope it continues to go up!!!

4 days post op! Her eye is looking great, just a tiny bit of swelling still
4 days post op! Her eye is looking great, just a tiny bit of swelling still

Going Rogue

It’s been nearly 4 months since our 2nd wean attempt, in September, at Seattle Children’s. Since then we’ve had to reevaluate our thoughts and feelings regarding weaning and tube feeding with River. After the practically unchanged oral status following the intensive weaning program, we felt that we had no more energy to put into weaning. That River just needed to be left to be as she is. What she was was roughly 50% tube fed/50% oral fed. We worked hard on her oral fluid intake, only to come home to the exact same intake as before we left for the program. I was disheartened, and decided to come to a state of acceptance. To just accept her tubie was part of her for now, and that it may not change for a long time to come. After our final Seattle follow up we decided to take a break from any feeding therapy. I informed her therapist at Mary Bridge that we would be taking at least a 6 month break from feeding therapy, that we were just going to let River coast and take pressure off of her to increase her oral intake. Mentally and emotionally my husband and I really needed a break. This decision was very difficult for me to make. I felt as if I was letting River down by not pursuing every avenue of help for her, that I was somehow giving up. But I managed to come to terms with that and realized we could all benefit from this new mindset.

Since the program she was having some trouble gaining any weight, she was remaining static, neither losing nor gaining. So in October we just started pumping her full of formula, even with the knowledge it would discourage her oral eating. We wanted to get some good weight on her, and it has been pretty successful thus far. Since then we’ve managed to get nearly a pound and half on her! As of the end of December she weighs 26 1/2 pounds!

Even though we’ve decided to quit feeding therapy, it doesn’t mean that therapy is over for her! She is currently in OT, to work more on her vestibular system, her difficulties with balance and her sense of gravity. These keep her very cautious and tend to hamper physical development if untreated. We also had her speech reevaluation, and her scores have dropped in the expressive area and they do recommend speech therapy. We are holding out on a waiting list for our favorite speech therapist, Ewan’s speech therapist that he saw for 3 years. Her speech continues to develop, and her receptive skills are very high, but she is hard to understand a good deal of the time. She may have a touch of apraxia, or just a mild speech delay, either way we are confident that just a little bit of speech therapy will do her a world of good.

Our holidays were very relaxed and very happy! We had a great time hanging out with our kids and spoiling them as much as possible! It was on Christmas day that I was really looking at River, trying to determine her health. Was she getting to a good weight? Was all of this tube feeding we were doing helping? We were feeding her high calorie feeds, and her oral eating and drinking were down to about 10-20%, it felt like she wasn’t eating anything! We’ve really been on our own lately with that, getting in to her GI clinic has been awful, and we won’t be seeing them until February!! I’ve been extremely frustrated with their office. We had a November appointment scheduled with them, then they called me like a dozen times to inform me that her GI doctor couldn’t make that appointment, and I had to change. When I finally got ahold of someone to change that there was no availability until January!!! Well I knew that he wanted to see her before that, so I told them to put me on a cancelation call list to get me in ASAP. So they never called, ever. I called back, and they said yes I was still on the cancellation list! But I had to put something concrete down, now we couldn’t get in until February!!! I’m still on the cancellation list, and apparently no one ever cancels! It’s ridiculous but I refuse to see any other GI doctor. Dr. P knows River well, and I don’t want to see anyone else. And I feel confident in my own assessments of her health to at least know her g-tube site is healthy, and her nutrition is good.

So having said all of that, we have gone rogue. As I said, River has been looking great, her weight has gone up significantly. We were noticing some serious signs of oral aversion creeping back in during all of that tube feeding. While she was on the high-calorie tube feeds, she started to become more gaggy on things, brushing her teeth, on various foods. I could see we were really starting to back slide. Ideas of another wean attempt began to sneak back into my head. I just felt, deep down, instinctually, that she is capable of eating and drinking everything she needs. I knew, and have always seen, when we tube feed she’s not hungry/thirsty. During the Seattle Children’s program, while all of us were diligently trying to get her to eat and drink more, the results were from the professionals that she eats a good diet and a good variety of foods and calories, but that her fluids lacked. ALL THE WHILE they wouldn’t let her get dehydrated. We were still giving her around 700 mls of water through her tube. OF COURSE she wasn’t that thirsty. I have known this, and I should constantly remind myself, that medical professionals always have to stay on the safe side. They will never tell you to do anything that might be considered risky. They have malpractice to be concerned about. For all I know they’ve all been screaming in their brains at me, hoping I’d pick up on it psychically, that if only we took her completely off the tube would we see what she is truly capable of. And maybe deep down I’ve always known we need to try this too, but I’ve had to balance my instincts with what her medical team tells me. Maybe this long hiatus away from her GI and the feeding team has been a blessing. We’ve decided to stop tube feeding River.

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Jan 3rd: Eating an amazing lunch, and entire 1/4 of a turkey sandwich and more!

We started January 2nd, 2013. Today is the 6th, this is her fifth day with zero tube feeds. We only felt comfortable saying two days tops! It’s been 5! Day one she didn’t wake up hungry because we tube fed her at night her typical formula bolus of 7 ounces of Compleat Pediatric formula. But she drank more juice and milk than I’d seen since the September program that day. She ate good. She asked for more food. She even went to her high chair on her own, waiting for her meals! This willingness and hunger she’s had has blown our minds. I started keeping track of her daily drinks. Each day it’s crept up an ounce or so. Day 2 she drank 8 ounces total, then 10, yesterday it was over 12 ounces in one day! Unheard of!!! We are taking it day by day, we have no goals. We are going purely off of our gut. If we feel she needs a tube feed, we will give it to her. We will continue to observe her overall health and body fat. I will weigh her about once a week. It’s time to start trusting ourselves on this. And we are cautiously excited.

Now in order to get the good numbers we have got, I have to hound her. I have to constantly stick a sippy cup in her hand, or her mouth. Constantly pop bites of food in her mouth for her. Make sure at least every 2 hours she is getting some sustenance. But I’ve never seen her accept this as much as she is right now. She lets us keep sticking drinks and food in her mouth. And if we are patient at meal times, she will eat more than we expect!!! The other incredible thing that has happened is her mood. Before this wean attempt, her mood was actually beginning to concern me. Was it typical terrible twos?? Was it holiday overstimulation? She was a moody cranky thing most days, tons of whining. I thought maybe it is her communication that was frustrating her, unable to get us to understand what she wants. But since Day One of the wean her mood has been glorious, she’s been beyond cheerful and cooperative! Fingers crossed it stays this way!

Our little beauty
Our little beauty

In other news, her eyelid surgery has been rescheduled. It’ll be on January 17th at 1:00pm. If we are still on no tube feeds at this point I definitely expect a set back, but that should be normal. Hopefully, best case scenario, she will go to sleep for a little while, wake up with minimal pain on her eyelid, and we’ll pop back home, and a little tylenol and our girl will feel fine. Again, fingers crossed.

Here’s to following your gut.

 

Surgery postponed & tummy troubles

So this week we found out that we will have to postpone her surgery that was scheduled next week on her eyelid. Unfortunately silly insurance plans get in the way often. We got it all sorted out, but the surgery will have to be rescheduled in December. So that’s where she is on that.

This week was a tough one for little River. She apparently caught a viral stomach bug, not sure what it was but she began throwing up Monday morning. She began keeping things down later in the morning, and the rest of the day went good, with me continually tubing her fluids. Tuesday went worse, she threw up everything, all day long. By 5 in the evening we were in the emergency room, we knew they could give her some medicine that will calm the tummy and make you feel like eating again. We were praying that no IV hydration would be needed. They gave her Zofran and that’s all it took! She began perking up and keeping things down. We had to take it easy that evening, and keep up on the medicine. Yesterday we had a similar morning, but once I got a dose of Zofran to stay down she began keeping everything down again. Today she is a new little girl! Hopefully this bug is done and gone with. None of us caught this virus, but I’ve heard rumors of a stomach bug floating around.

Enjoying a popsicle in the Mary Bridge ER

This came at such a bad time! Last week she had her follow-up at the nutrition clinic in Seattle, and she is actually down in weight then the visit before that! We had to come up with a revised plan on her daily feeding schedule to see if we can’t get her to eat more calories orally, and also to increase the tubed calories without interfering with her appetite. We switched to a larger tube feeding for breakfast, then tubed water following lunch and afternoon snack, hoping to increase her hungry in the afternoon. But then tubing her following dinner and bedtime with extra formula and calories. She was 11.6 kg at that appointment. In the ER she was 11.5 kg. So we have some calorie replacement work to do now that she’s better!

Upcoming Surgery #5

It’s that time again, although minor, it’s still time for surgery. I’m nervous, and would love to postpone postpone postpone. But this simple little surgery could mean a world of difference to little River.

Today we had a crazy fast consultation with a cosmetic surgeon. He’s an expert in eyelid and facial reconstruction, and works on babies up to adults. Dr. Pratt is who we visited this morning, River was an angel even though we had to wait a long time. Even though I was put off by the fast paced crowded office, after doing research and then meeting the doctor I feel confident that he can fix R’s little eyelid.

River has ptosis of the left eye caused by Horner’s Syndrome, acquired when she was undergoing her very first surgery at 2 weeks old to repair the coarctation of the aorta, a tiny little nerve runs up the aorta to the left eye and unfortunately it’s a risk that is taken when having this type of life-saving surgery. When that nerve is damaged or severed it will cause constriction of the pupil, drooping of the eyelid and several other minor symptoms. Usually harmless, but in cases such as River’s the eyelid can droop too far and obstruct the pupil and vision. We are hoping that by clearing her vision she will, first of all have full sight!, second hopefully improve her gross motor function(walking etc…).

Dr. Pratt is confident he can do the most minor of repairs, that she is fortunate to have not been born with the disorder, or otherwise her muscle would be much weaker. So in order to fix her type of condition it requires one tiny incision in the crease of the eyelid. Recovery and pain should be very minimal. We will be doing the surgery at Mary Bridge, and it will probably take 3-4 weeks to get in for the procedure. I’m so excited that this tiny little change could mean so much for her! Can you imagine that whenever you simply look up or to the side you lose one whole eye’s vision? That when you are looking straight on you only see out of half of one eye? This little surgery is a huge gift I can’t wait to give her. And I won’t deny that it’ll bring me to utter tears to see my little girl have symmetry in her face, to be able to see the beautiful eyes she was born with and the perfect eyelids she had, then lost. To know that she will have the gift of seeing with both eyes! To see her face as it was always meant to be. She’s so beautiful, so gorgeous anyway, but to know that we will be only correcting what was already there! Whatever, I’m crying already.

Waiting for the Doc, behaving herself wonderfully