Making progress

Wt: 19lbs 11 oz
Ht: 29.5"
Age: 16 months/13 months

Connor is slowly gaining weight, but we will take it! The first weight check after doing 2 weeks of the blenderized diet was not a fail but he did not gain, he weighed exactly the same! I was happy with that since I was expecting him to loose with such a diet change. The nurses seemed to panic when he didn't gain but his pediatrician was satisfied with it. Connor had gone an entire week without ANY vomiting, had an increase of interest in eating food, coughed and gagged way less, and just seemed all around more healthy. We continued blending away and slowly increasing his volume, he is up to 6 oz now! I never imagined he could tolerate that much due to him vomiting after 4.5 oz with formula! Then his next weight gain, 2 weeks after the plateau.......he gained 8 ounces!! I was thrilled and over the moon that he was finally gaining a decent amount of weight again!

The part that we can't figure out is why he went back to vomiting after that 1 week of being free from it. He is back to 1-2 times a day of vomiting with no consistent pattern so we can't figure out what the issue is. :( He goes to see his GI doctor this week, I am hoping that he will help us figure this out. Poor thing shouldn't be vomiting after his nissen, much less doing it everyday! The last time he was at the GI , his doctor had mentioned doing another EGD (scope) to see if there is something we are missing. He wanted to wait out the start of the blenderized diet and then determine if it was still needed after Connor had adjusted to the new change. So, I have a feeling another EGD is in Connor's near future.

So we need to get this little guy eating by mouth! I had a break down moment after feeding therapy a few weeks ago. After seeing all these other children and babies eating and drinking and watching Connor continue to throw food, refuse and not improving - I just lost it in the parking lot. I was hooking the syringe to his gbutton and just started bawling, having this weak moment of wondering why my child can't do such a simple survival skill. I think the hardest thing about it is knowing that he can do it, he was drinking bottles like no tomorrow when he came home from the NICU. Even though he never expressed any hunger, he would suck down his bottles and even take a few bites of food from a spoon. After having my moment, I have been determined to find the right method Connor needs to encourage him to eat!

I have been researching feeding clinics all across the country, I have even read about some out of the US. I have been reading different methods: the Graz method ( weaning tube feeds to make him hungry) and behavioral methods ( positive reinforcement with toys). After Josh and I had many discussions, we are attempting to try both of these methods at home. With the help of a dietitian, we have cut back on the number of feedings. Instead of him getting 6 feeds, every 3 hours he is now cut back to 5 feeds. She ultimately wants us to cut back to 4 to encourage him to eat by mouth, it is kinda hard to want to eat if he is full all the time. We also started using a specific "feeding toy", when Connor opens his mouth for a spoon or cup then he gets to play with the toy. If he fights or pushes away then we take the toy away until he opens and eats the food. This is quite a challenge but Connor is a smart little guy. He catches on to cause and effect rather quickly, he usually can last about 10 minutes with this method before he is completely done. We have been able to get 10-20 bites/ day like this where as we could only get 2-3/day previously. If we aren't able to get him eating then we will consider traveling to where ever we need to go for weeks of intense therapy. I am positive and hopeful that we can get him eating again. Here is a video (sorry, rather long! I recorded it for his therapist who is using it in a feeding seminar) of us trying to feed him:

OK, enough of the feeding stuff (sorry that consumes our life, that is all we do everyday so it is constantly on our minds).
Connor had a little NICU pool party with sweet Zuri and Kennedy. Here are a few pics from that, all of them kept their backs to each other most of the time :)

Connor, Kennedy & Zuri- impossible to get a good picture of 3 moving 1 year olds!

Playing in the pool

We also took Connor to his first Music and Movement class offered at our library. The first week was not good for him. I believe he was in sensory overload and didn't want to do anything that he was supposed to do! There were a ton of 1 year olds plus mommy's and chaos!! I was in sensory overload myself! Haha The second week, it was more organized and Connor handled it much better. I am hoping that with him having more interaction with other children his age that it will help improve all of his skills.

At his first Music & Movement class, not so sure about it!

Blending away!

Wt: 19 lbs 3oz
Length: 29"
Age: 15months/ 12months

15 month well check-up

I hope everyone had a great 4th of July! I was off from work so Josh and I decided it was our only opportunity to take Connor to the beach! We took a day trip to Isle of Palms and had a great time. Connor wasn't too sure about the water at first, but after the second attempt of playing in the water he loved it! I hope to be able to take him back to the beach before this summer is over. Not to mention, it is so rare that our little family is all together for an entire day so that made it even more special.

First trip to the beach!

Playing in the water

All smiles- check out all those teeth!!

Traveling with an every 3 hour gtube feeder is quite a challenge but we handled it quite well! Needless to say, I spent a lot of time in the back seat feeding Connor while Josh drove! We officially started his blenderized diet on June 30th and dropped all Elecare completely! He had a lot of blood work drawn the day before checking vitamin levels so he would have a baseline to compare to a month after the new diet.

With this diet, a special industrial blender is very helpful so that it purees the foods well enough so that it doesn't clog his gtube. These blenders range in price, basically $400 plus. We were very fortunate to have one donated to us after an email I had sent sharing Connor's struggles with formula, oral aversion, and health issues. We are very grateful that this company wants to try to help our little guy!

So we mix up all kinds of goodies into the blender and use that for his feeds. He gets chicken, oatmeal cereal, rice milk, avocados, green beans, pears, blueberries, squash, and olive oil. This makes a little over 1000 calories/ day but he doesn't receive all of it yet. Right now he has worked up to 5 oz ( amazing because he would be vomiting a ton with anymore than 4.5 oz of formula) and gets around 900 calories/day. This is about 100 calories more than he got on formula, not to mention he vomited about 3 times a day so he was actually getting less than 800 calories. His vomiting has decreased, he actually went 48 hours without any vomiting- AMAZING!!! Unfortunately I got too excited and he decided to break that record, it seems he averages about once a day lately. We change the fruits and veggies daily so he gets a wide variety, that may be the reason for the vomiting. It feels amazing to know he is getting nutritious foods instead of straight manufactured formula.He is also getting foods that babies his age eat, if he were to eat by mouth. The blend is so thick that it can't go on his kangaroo pump so we have to manually push his food in, about 1 oz every 5 minutes. This is why it is a challenge when traveling, but we will eventually master this! His pediatrician wants to do a weight check after 2 weeks of being on the blenderized diet, so we will either go at the end of this week or beginning of next.

Traveling with blenderized diet

I am hoping and praying that his weight increases at a steady pace. Everything I have read about the BD diet says that they all loose weight once they start all food instead of formula and then it seems to sore up! It is a huge adjustment on ones body, I just pray that Connor hasn't lost any weight! Seems we have intrigued alot of people and his doctors with his new diet, I will continue to update on how he tolerates it!