Bonus Therapy Picture Post

Timmy had a really good day of therapy today. After working hard for his OT, he continued to work for his speech therapist. These were taken toward the end of his 2nd session today, and toward the end of a 15-20 minute stint of sitting up and playing. Quite a large bit of work for our little guy, but on the days he allows us to push harder, we'll let him work harder. 

I kept the therapist out of view, but she got a lot of smiles today.

He moves quite a lot, and makes it hard to get many good pictures. Just a blur at times.

Timmy's Diet & Tube Feedings

I realize with Timmy & his blog, some things slip through the cracks. When we first start down a new direction, we are often overwhelmed and may not post many details. Later, when we are getting the hang of something, it seems so 'old-hat' that we don't post. We wanted to give you just a small glimpse into life at our house feeding a child with a tube.

When we first came home from the hospital, Timmy was being fed breast milk and formula. Over the months of limited sleep and all the energy needed to care for Timmy, his diet changed to all formula. After turning a year old, we saw a nutritionist that switched Timmy over to a formula using real food for children over a year old. Through all of this, we noticed that any formulas we had used were harder for Timmy to digest than the breast milk had been. It meant a struggle to get the recommended amount of food in him each day. The nutritionist set a goal of 650 ml of food (formula) a day - and it was not looking promising.

Fortunately, we had been doing some research and reading about blended diets for 'tubies' (people fed through a g-tube, ng, or nj tube or some other variety of tubes). After deciding on a handful of foods to try first (as they must be tried one at a time to check for allergies or processing problems) we dove into blending. We had a decent blender, but 2 brands kept being suggested as being able to process foods into small enough pieces to go through a 12 french tube (about 4 mm diameter). We purchased a refurbished Blendtec and got to work.

Using the Blendtec and adding raw or cooked foods (depending on the food) and water with a little bit of Olive Oil to reduce frothing, we make a puree that is about the consistency of a stage 1 baby food. The high power of the blender makes it look almost like a liquid while it is moving, but it comes out with a nice thickness to it. If I remember right, this is a batch of avocados.

The blended mixture is then poured into ice cube trays to facilitate measuring and defrosting the food, covered with plastic wrap, and put in the freezer for 12-24 hours to harden up.

When the cubes are frozen, we remove them from the trays and pack them into freezer bags in the freezer. Here we have: Avocado, sweet potato, prunes, peas, blueberries, bone broth, green beans, broccoli, chicken, eggs, peaches, apples, and garbanzo beans.

Each week, 7 bags are made up of a variety of the foods that we have. 16 or 17 cubes get put in a bag, and set in the freezer with about a days worth of food for Timmy.

Each day, we take the bag out, put the contents in a pot, and defrost Timmy's food.

Once defrosted (or cooked if cubes are still frozen), it is blended again to get rid of any bigger pieces leftover from blending a large batch, and then it is strained through a sieve to make sure we remove and 'chunks' that could clog Timmy's tube.

To thin it out a little more, we add a few ounces of formula and mix it together. Some molasses is also added to help with nutrition, calories, and constipation.

We pour the food into a Squeasy bottle (on left) which makes it easier to load the food into the waiting syringes. 

Syringes are loaded, capped, and set in the refrigerator to take care of the next feeding. This is Timmy's 'dinner' - his food that he will get in 2 doses around 5:30-6:00. Timmy gets 150 ml of food at dinner out of the 540 ml of real food he gets during the day. We also give Timmy 200-220 ml of formula during the day for a total of 740-760 ml of food a day. (Currently, this changes slightly from time to time as we tweak and add volume to his routine.)

 At feeding time, Timmy gets a small shot of water through his tube about 15 minutes ahead to help get his tummy ready for a meal, and then the food is pushed with the syringe through the g-tube. At present, he gets his food at a rate of about half an ounce every minute and a half. Now if we could just get him to help push the syringe at the appropriate intervals. :)

Tube feeding is definitely a different world than we had ever experienced with our first 8 children. It has a steep learning curve, but hopefully one we are staying ahead of as best we can. We have found that many children have feeding tubes for many different reasons. Some won't eat, some have oral aversions, some have illnesses that cause digestive issues, some have problems getting the food to go into their stomachs instead of their airways, and some, like Timmy, have to work too hard to get food in orally (can't breathe, eat and function properly at the same time). We are grateful that this one 'small' adjustment has allowed Timmy to grow and thrive and let his heart and body work easier when his heart defect already makes things hard enough. We do not know how long this stage will last for Timmy, but step by step and day by day it continues to be a great adventure we will enjoy with him.

Continued Progress

Therapy continues for Timmy with PT, OT and Speech on a weekly basis. What is shared with us gets worked on through the week with Timmy and he has been growing and developing well over the last few weeks. 

As far as praises: Timmy is continuing to gain weight even as we have adjusted his feeding schedule and no longer gets feeds through the night. He has a feeding before bed and then gets food in the morning with his 6:00 medications. Even with leaving a 10 hour gap between night time feeds, we are able to get enough food in him to meet his needs and keep him gaining. Primarily, this is because we have gone toward using more real food over the formulas. We can give him a formula and it will persist in his stomach for hours - making him full and unable to take more food in, but when we give him real foods (chicken, avocado, berries, fruits, sweet potatoes, etc) he is able to process the food better and he is able to handle a larger volume of food. The nutritionist set 650 ml as the volume goal for Timmy until our next appointment. As of tomorrow, we will be 5 weeks until the next nutritionist visit, and Jen has Timmy's feedings up to around 730 ml. The closer we are to 1000, to more likely the nutritionist will be to order the whole food enteral 'formula' for Timmy. It is a completely balanced food for people with g-tubes made from real food. We can work on doing that ourselves with blending Timmy's food for him (which we are doing already somewhat), but with Timmy's health needs, a well balanced diet is more important to his growth and development, and the real food formula would make sure we had all the bases covered.

Also, therapy is going well and Timmy is taking off in leaps and bounds. Well, his leaps and bounds include sitting and rolling over, but they make us happy - and apparently they make him happy, too. Actually, this picture of Timmy sitting without being held or being assisted (even if it is for very short periods of time), brings us a lot of joy. We are blessed.

Never a boring day, but not much excitement

I do not miss the days of multiple blog posts in a day. I don't even miss the days of daily blog posts. I do apologize for going so long between posts, but between not much excitement (a definite praise), and  never actually being bored, the blog takes a back seat to life.

With that said - there is actually stuff to report. Timmy has met his therapists. Kim for Speech, Katie for Occupational Therapy, and Sarah for Physical Therapy. Speech is concerned with all things oral - speech and eating by mouth in particular. OT and PT overlap a lot at present, but having multiple people working with us gives us more ideas of how to work with Timmy during the week. All three therapists are wonderful with Timmy, seem very competent in their knowledge and abilities, and seem to fit into our home nicely (There probably is a better way to express that, but having therapists that are easy to talk with and are personable makes this whole 'having multiple people into the house every week' thing much easier to handle).

As far as therapy is concerned, Timmy is improving in his sitting, reaching and rolling skills all the time. His full-time in-house therapist works with him and enjoys showing off his victories when Timmy's other therapists come to visit. At times he is vocalizing more, grabbing more things, and shoving things in his mouth (which makes Kim - the speech therapist) happy. In the next week or so, we may even try to introduce foods orally again, so progress on many fronts.

It seems with every advance, we have little set backs. We haven't figured out if it is allergies or a summer cold, but congestion has hit in the house, and afflicted Timmy as well. His breathing is a little more labored and we have a little more added to his care routine, but so far he is handling it all in stride.

I will hope to update sooner next time, but VBS starts up next week, so I will not make any promises. Thank you all for your concern, interest and prayers on Timmy's behalf as well as ours. We can't help but be grateful for the great support we have.