Drink

"When will they take out the tube"? This question is asked so often. My answer is, "it is up to Aero". Aero will decide based on how quickly he will learn to oral feed. Aero is progressing nicely at oral feeding. Eating solids is only part of the equation for a child under the age of one. It is the lesser part. The skill that Aero must master is drinking. 100% of his nutrition is liquid in the form of breast milk.

Most babies...I don't need to explain it , right? We know how most babies receive breast milk. If they don't breast feed, they bottle feed. Aero has done neither nor does he have the mouth muscle/swallow coordination to perform either one of them to receive enough sustenance. How are we going to transition him to oral feeding when he does not have the skill set to drink liquid? How does he gain the skill set?

This has confounded me ever since I realized he was not going to breast feed. He just does not have the coordinated negative pressure suck, swallow, breath rhythm because it was suppressed at birth with all the tubing he wore for 3 months.

Four times daily we do feeding practice. Aero's progress is a sight to behold; he is eager, interested and craves variety and flavor complexity in his food choices. His intake ranges from 2 ml to 15 ml at one sitting (perspective, his total daily intake of breast milk nutrition is around 750 ml). Not so worried about intake volume but frequency of trial. Practice, practice, practice with the goal being a confident and strong swallow. And, for babies under one year, solids are not be THE source of nutrition/calories. Solids are about food play; experiencing new flavors and textures.

So, how is momma trying to teach Aero to drink liquids? One tiny drop at a time with a multi-pronged approach. First approach is sucking through a straw. I cut some soft, narrow plastic tubing about 3 inches long. I suction into it a few drops of breast milk and present it on his tongue. The hope is that he will accept the liquid by swallowing (at first, he just let it spill out of his mouth). The next step is that he will close his lips around the straw. The next step would be that he eventually sucks at the straw coming to the realization that he can control the flow. I think this will take us about 2 months until we get to try with a cup and straw.

Second approach is drinking. Filling a small beaker 1/2 full of breast milk and placing his hands along the side with mine over top. I tip the breast milk gently to his lips and right now he darts his tongue in and out of the liquid. This will be the most difficult skill to master as it takes a very coordinated effort by several muscle groups. I am not sure a baby can gain the skill but I think it is a worthy practice because it allows him to swallow small amounts of liquid and that helps in making him more comfortable with liquids. It is a challenge going from a puree texture, something that you can get your tongue involved in the movement of. Breast milk is thin and it quickly moves around your mouth. In the beginning, it was disconcerting to him and he did not know how to handle the thin liquid so he would spit it out in panic.

Third approach is bottle. I purchased some slow flow nipples that allow for flow through biting and we are using a very small bottle he can get his hands around. This one requires some heavy duty psychic skills on my part as he is not often in the mood to try. The best success I have is when he is an intense oral mood, trying to chew on anything and everything (as babies do at this stage). Twice now I have hit this one right and he has chewed at the nipple releasing just enough breast milk that he can control.

Also realize that this is just not about nutrition. This also plays a very big part in language development. Having a strong, coordinated suck/swallow is very important to developing the ability to speak. I am sure you are aware that it is a challenge for children with Down syndrome to speak legibly so they are understood (we are are also working on baby sign language but that is another story). That is why working on these foundational skills is so important in helping Aero achieve his fullest potential.

I love working with him everyday. He is so courageous and  adventurous. I know that one day I am going to watch him gobble down a piece of pizza in 2 seconds flat and chase it with a big glass of milk and find it incredibly funny that I worried that he would never know the joy of yummy food.