Weight gain and Feeding Issues.

Well goods news first right?

Logan is now officially outgrown 0-3 months clothes, yay!!!

I got to go thru his clothes and remove all the 0-3 months clothes and pull out a whole new batch of 3-6 months clothes.

 

What I also was looking at when I was going thru all his clothes is how tiny he was as a newborn.  He weighed 6.3 at birth but after two weeks in the NICU he was 5.2 when we took him home.  This is what he was wearing…

That little outfit is in comparision to the pants that fit him now and those pants are tiny (3-6 months) He wore premie clothes for the first few months of his life.  So even though he is still off the charts small (literally, he is well below 0%) he has grown despite all of his setbacks.

The good news is that feeding is going great.  He is eating really well.  Probably not as much as a typical 10 month old but he has made HUGE improvements for him.  He is eating three albiet small, meals a day, he has to snacks (finger foods), and 3-4 bottles.  I have been adding 1/2 – 1 TBLS. of flax seed oil to everything he eats.  After trial and error I have found flax seed oil to be the most tasteless but also healthy oil.  I have tried olive oil, hemp oil, canola oil, and grapeseed oil but the flax seed oil seems to be the least noticable to him.  One TBLS. of that adds a whopping 120 calories to everything he eats (its also a heart healthy oil!).

(This concoction here is Greek Yogurt, flax-seed oil, and Agave nectar-which is just a healthier sugar)

Now on to the bad news…starting all of this food has given rise to a whole new set of problems.  Constipation, rectal bleeding, rectal prolapse, and extreme discomfort 😦

At this point I am not sure if this is a heterotaxy thing (heterotaxy kids are prone to constipation and a slew of other GI issues) or just a major switch in diet that is going to take some getting used to.  The rectal prolapse (which was mild) was not something I ever want to see again (just google it you’ll see what I mean.) and I think it has now made him scared to go. 

So I am now having to increase his fluid intake.  I hate doing this because everytime I give him some juice it is a missed opportunity to give him calories!  I am very nervous about this because Dr. Patel has brought up the G-tube (a surgically implanted feeding tube) multiple times now and I believe a decision will be made based on his next exam which is on Tues.

 

This is a picture of a G-Tube.  I don’t want to have to feed Logan like this.  I would much prefer to feed him naturally.  So we will see.

The other bad news is that the huge amount of increase in calories has done nothing to improve his respirtatory rate.  He is breathing 77-82 breaths per min (normal would be about 1/2 of that or less) he sounds like he is out of breath all the time.  He still can’t hold his head up, but I don’t understand how he ever will when he gets out of breath from just laying on his back playing with a toy.

I have more to tell but I am going to finish posting tomorrow because Logan is crying….

5 thoughts on “Weight gain and Feeding Issues.”

  1. Yeah…3-6 months is a great achievement! I like your food ideas…I am going to have to try flax seed oil. I know you are going to fight the G-tube…he is eating so well and you don’t want him to stop eating.

  2. Way to grow, Logan!

    The kids I know with G-tubes still eat, they just get supplemental nutrition through the tube. You could probably use it to give Logan higher calorie stuff that he doesn’t like the taste of.

  3. Sorry about the tummy issues.I really hope he gains some weight with the new foods.Looking forward to seeing what the Dr P has to say next week.Thinking of you.

  4. Hi! I am a fellow heart mom and my youngest child has HRHS/TGA. I’m really surprised that the drs have waited this long to recommend the Gtube because at TCH we couldn’t leave the hospital without learning the NG tube or getting a Gtube. Knowing we had at least a few months of tube feeding ahead due to lack of weight gain… we went with the Gtube. We have had a few issues with the balloon busting (and needing to put a new one in), but overall.. having it has been a real blessing! Whether John is up to eating or not… I know I can get his milk in. Our drs have been insistant on a 20 gram a day weight gain. John was 8 lbs 14 ounces at birth and now at 6 months is 16 lbs 1 oz. We don’t always use the tube.. sometimes he does drink enough of his bottle… but it is there when we need it. We always offer oral first and have recently started some spoon feeding of rice cereal and sweet potatoes. Just want to encourage you that it will be ok if you do decide to have the Gtube placed and he will probably have more energy from the extra calories.

    1. Veronica- I know, I know… 🙂 The G-tube is probably scarier looking than it actaully is. The reason it hasn’t been pushed harder for Logan is he also has a bunch of GI issues and he is asplenic. G-tubes do get infected a lot and being asplenic any major infection could kill him. I have also heard of G-tubes causing intermitten obstructions in intestinal malrotated kids (which he is) and he also has a tiny stomach and delayed gastric empyting and a hiatal hernia, ect… So I think that it has been a less is more thing with him since he already has so much going on. My biggest fear is infection. And that he has no room for error. Thanks though for your encouragement and I may need a pep talk after tomorrow if Dr. Patel isn’t happy with his weight again!

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