Regrouping

So the big anticipation of the month was Noah's tube change. To recap, about a month ago we noticed a tiny hole in Noah's PEG tube. We continued to feed him as normal and found that the leak only occurred when the tube was kinked. I called the g-tube clinic and was told to book Noah in for a tube change with the surgeon. Done and done.

We arrived on Wednesday morning ready to have the change done. I hadn't slept in 4 nights, both due to pregnancy and the worry about the fact that I had been told time and time that Noah wouldn't be given any sedation. I wish I didn't worry. I prayed through my worry. I asked God to give me peace and wisdom in my hesitations about the change. But I'm human and sinful and I couldn't settle down.

We met a different nurse for training. We started talking about Noah's tube, the leak, the fact that we are doing blenderized. We often feel very defensive at clinic and this time was no exception. Immediately they got all concerned about blenderized and asked what kind of blender we had and how we had come up with the recipes and who was monitoring the situation. Sigh. I confidently said we were using a Vitamix and all the recipes were checked by the dietitians from Infant Services. We went over the challenges of using a mickey skin level device with blenderized. I'd love to hear from parents out there about any challenges they have faced with BD diet and the tube - ie. plugging. I'm thinking the occurrences are few and far between.

Anyways (please excuse my thoughts, my pregnancy brain is in full-force and I seem to be all over the place!!), we move beyond the feeding to the removal of the PEG. She told us it would be safer to pull the PEG out rather than cut it off at the stomach and let it pass. I was TERRIFIED. This is exactly what I was afraid of. I asked once again about sedation. HALLELUJAH. She said we could absolutely have Noah sedated, just not today. It had to be booked in day surgery about a month ahead.

This is both wonderful and absolutely frustrating at the same time. I have been asking the g clinic for months if Noah could be sedated when the time came to change his PEG. No, no, no was the answer. I was told it wasn't necessary. So, now the possibility was on the table and I didn't want to do the change without the sedation. I've met parents online whose kids have had major challenges after a tube change at a later age, in fact even some had post traumatic stress disorder. Noah already has major "white coat" syndrome, meaning he can't stand Drs. or Dr. offices. He freaks out and screams anytime he is examined, even if its as simple as listening to his lungs. I always have to pin him down at appointments.

So the frustration? Why was this person saying yes? I told her that I had asked before. She said she probably shouldn't have said anything about it. WHAT?? We are the parents of a tube fed kid. We should be given ALL our options for care and treatment for each and every procedure. I shouldn't have to access most of my information from strangers I meet on line (whom I deeply respect and appreciate but you know what I mean). So often I have felt like a small child when I inquire about equipment etc. and the responses I receive. Now, this is all in the past, I'm not upset, I'm not going to dwell on it. I just hope for other new parents who are tube feeding that they would not feel as frustrated as we have. My advice - find other tube feeding families to talk with and gain wisdom and insight from their experiences!

Anyways, she asks to see the tube. She acknowledges how small the leak is. She talks to Dr. Wong. We talk to Dr. Wong. He looks at my expanding belly (countdown is on to baby!) and we all decide to wait. Wait until sedation can be booked and continue to use the still-functioning tube until maybe August or September. Relief. Rejoice. Regroup.

This week to come is full of appointments once again. I need to have an ultrasound on Tuesday just to check the size of baby. Position makes no difference of course because of our planned c-section. I'm measuring a bit large (I feel a bit large!) I doubt it will change our date for surgery. Noah has PT and Speech this week. He has been given a speech assessment recently and he is certainly below average in his basic speech. We know he understands so much but his only word is "bye bye" and he used to say "mama" and "dada" but not anymore. They will soon check his hearing, not that any of us are worried, but you know how the medical system works and we appreciate them covering off all the bases for Noah. We just keep working on encouraging his babbling!

As for PT, Noah continues to try and stand and he has shuffled a bit around the coffee table. We keep many of his toys up on tables, couches, ledges to encourage him to stand up. Noah isn't motivated by many things so again we wait for Noah to make his move and try to encourage him as much as possible. He is less afraid of being on his feed which is a relief. He still gets very frustrated easily and will hit himself or hit his head against the floor or furniture. We aren't sure why he does this but have chatted with our Ped. about it and we are just seeing how this behavior proceeds with time. He still has lots of smiles and laughs every day, except on feed! Food and Noah are just not a happy mix :-)

Blending food is going well and while still full of figuring, calculating, watching Noah's tolerance and finding the right foods to use, it is working fine. I'm blessed to have great resources like Allie's mom Jodi who like me found it hard to find exact recipes online and she readily shared her recipes with me. I hope I can be a resource to others in the future. Thank you, Jodi!

I think this will be my last blog until baby #2 appears on the scene. Jared will post some pictures and an update for your fine folks when the time comes and I'll stop typing as the carpel continues to worsen. I remember it getting better when Noah was a month old so I'm hoping it will be behind me in a few months! The nausea and vomiting disappeared right after birth with Noah so here's hoping for a similar outcome! We are very excited to meet our little one.

Easter blessings to each of you.

Blenderized Diet Update

Tupperware kitchen party - couldn't get him to smile with his eyes open!

Enjoying the spoiling from Uncle Rob who loved shopping for Noah in Disneyland!

Hanging out with the "big" cousins

One of our first blends....they have gotten "better" and now include fresh, whole food ingredients. I'm really happy about that and hope to be able to blend only whole foods (in terms of fruit and veggies)

We are doing well in Noah's journey of "eating" real food. It is well worth the effort and I hope that we'll see the scale show good results next time we have a weight check.

We truly believe that Noah is doing well on this diet. He has slept through the night, has had no more daily "blowout" diapers,. Noah retches at least once around each feed, plus his usual morning retches (2-3 in the hour after waking) so that remains consistent. That is okay with us because it confirms our feeling that Noah is volume intolerant. He retched on Good Start formula, Neocate, Pediasure and now on "real" food. He retches on water. It is hard to believe he has a cow's milk/soy allergy or intolerance based on our continuing journey with tube feeding. Perhaps he is lessening his retches with age? It is hard to know and probably not worth spending time trying to figure out. We are happy to be feeding our little tubie this daily mix of "real" food and have ensured (well, Jared has) that we have all the supplies to make the blending as easy as possible.

What do we blend? Well, I have to admit to breaking a few "rules" and not spending a few days in between introducing new foods to see if Noah has any allergies. We justify our actions by the simple foods we are using and also the fact that Noah did eat some solids between the ages of 3-6 months and never showed any intolerance. As our Pediatrician reminded us, "how many kids are allergic to carrots?" So we are being conservative with our ingredients and watching Noah's skin, bowels and retching to monitor his reactions. So far, so good.

Here are the basic ingredients we use in Noah's blends. They do vary from day to day a little based on his calories/fat/protein/fiber/carbs/vitamins. Basically, he has a veggie, fruit, grain, protein and a fat daily. I use "sparkpeople.com" to calculate his daily intake and it is easy to print off each day to discuss with Noah's RD and Ped.

My main goal is finding high calorie/higher fat foods so we can boost his overall calories without having more volume. Noah can take 6 ounces perfectly but starts to look a little weary when I get to 8oz. However, 4 feeds in a day is enough for everyone so I'm pushing him to the 8oz per feed so that we can at least have quality nap time/play time in the day. I'm not willing to do many feeds out of the house right now (partly due to pregnancy but also Noah's need for a quiet environment during feeds) so we are real homebodies, but Noah doesn't seem to mind!

Here are some examples of what we've blended so far:
Applesauce (sweetened high-calorie type but I'm planning to start using a whole apple soon)
Pear puree
Mango/pear puree
Prune puree (just a few teaspoons)
Cooked, enriched macaroni (I initially used this but have left it behind for higher nutrient grain options)
Cooked lentils and beans
Hard-boiled eggs
Cooked chicken breast (you should see the Vitamix at work - awesome!!)
Avocado (this is my favourite "power" food)
Brown Rice Infant Cereal (thank you Amanda for the tip on infant cereal)
Whole Goat's Milk (I have only been able to find this at Safeway or health food stores but I'm so happy to have it in our quest to keep things cow's milk/soy free for now)
Organic Baby Oatmeal Cereal (cow's milk/soy free!)
Orange veggie puree (carrot, sweet potato or squash - planning to start use baby carrots etc.)
Green veggie puree (peas or beans, I just bought a bag of frozen beans to start trying those)
Olive Oil (good quality extra virgin but will try Omega, flax and coconut oil too in the future)
Dose of liquid multivitamin (Wampole's brand)
Drop of Vitamin D daily

Other medical info:

Sweat Chloride - was NEGATIVE. We are so grateful that Cystic Fibrosis is off the list of possible diagnoses for Noah!

Tube change - should take place next week. I'll let you know how it goes!

Have a great week, everyone!