Meltdown = Me

Meltdown. Complete and utter...sobbing hard and deep.

Today was that day. The day where the carefully constructed house of cards, my web of illusions and gentle denial met face to face with hard, cold, reality. 

Somehow, someway I have to got to figure out how to navigate this all because right now I feeling so stuck in my own mud. This is hard. There, I said it. Being a single parent is real hard. I find myself worried over everything; Aero's health, how I can best parent him, how I can best be his speech, physical and feeding therapist, how I can best be his mom, how I can support us, do we need to move, where will we move, what medical tests does Aero need this month, next month, when can I take a shower, why isn't he eating more, what food can I make to entice his eating, and am I doing everything I can, what else can I do......it is tough being my own sounding board, the conversations in my head just go in circles 'cause I am having dialogue with myself.

Zia J to the rescue. She has such a beautiful way of just cutting through and focusing on results. I think we at least have decided to investigate low income housing. Perhaps this option will at least let me worry less about finances. I could really use one less worry. That would be nice. 

Occupy LR

Mr A getting creative with his play gym. Has already sussed how to make a fort. Or, perhaps it is an 'Occupy Living Room' protest regarding his boredom level with his toy assortment. Guess it is time for a trip to our fave toy store, SoDo Goodwill. Seriously great selection, they are clean and why would you pay full retail when Aero's feed me stimuli factor is set so very high?!

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.

Still

Sit still.
My response to online dating surveys when inquiring as to your favorite activity.

For 20 or so years, I have practiced the art of deep stillness. Typically, my sit still sessions coincided with sunrise. I began my day enveloped in darkness, awake, aware, steaming cup of coffee in hand, journal and pen in the other as the sunlight slowly spread itself across the horizon.

I never understood the perpetual motion of some women. Always up and about doing something. Why? Sit. Still, for awhile, I would implore. Can't the dishes wait?

Aero had been home from the hospital not 48 hours when I realized my 'sit still the dishes can wait' paradigm had to do a major shift. When I let the dishes wait, they waited 3-4 days, piling up before my horrorfied, sleep-deprived eyes. Panic ensued because the more I avoided, the bigger the the project became and caring for Aero was all consuming. When would I find the time?

And as the paradigm shifted, the veil lifted. Now I know why 'some' women (read: women with children) are perpetual motion machines. If you don't take the moment, you lose it. Walking around the house with a crying baby and spying piles of dirty laundry, dust bunnies, dirty dishes and overflowing garbage do not lend itself to staying calm and centered in the storm.

Sitting still is still my favorite activity only now I share the time with the best snuggler in the world. And although stillness is now truly a luxury, my life long practice has given me the ability to close my eyes for a moment to feel that sense of peace and calm that stillness allows.

Almost Autumn

Posing with a few first harbingers of autumn

What Is Cryptorchidism?

Emesis
Rummaere
Anastomosis
Gavage
Hypotonic

I have encountered a whole new language immersed in this world, the world of medical-ease. Prior to the c-section surgery that brought my beautiful boy into this world, I had never, ever been hospitalized. Can't say I hated hospitals because hate for me is a strong emotion saved for someone, something that done me wrong. Hospitals, per se, had never done me wrong. Honestly the most exposure I had with hospitals was General Hospital, yes the soap opera of which I was an addict in my late teens. Also, Marcus Welby, Chicago Hope, Nurse Jackie. You get the picture, TV Land fed my paranoia. I truly carried the prejudice of a good vs.evil schema. There were a few good doctors trying to make a difference fighting the bureaucratic bloat of the behemoth for profit hospital. Jeez. Yes, TV was my babysitter and look, I turned out OK except for a few, deeply ingrained delusions.

Emesis, to vomit. Anastomosis, I was able to dissect this one thanks to my origin of words class freshmen year of college (LOVED that class)...' ana is to reanimate, mosis is to make move'. It was Aero's 'big surgery', the reanimation of his esophagus. Gavage, introduction of nutritive material into the stomach by means of a tube, usually threaded through the nose.  It is a method for feeding, typically a preemie newborn who has not yet learned to suckle not do they have the strength. Hypotonic, having low tone, floppy and flexible. Babies with Down syndrome are usually born with low tone. This is why they reach milestones at a later date than typical babies. It takes them awhile to build the coordination of muscle.

Rummaere? I heard this term used quite often in the NICU. It confounded me. I thought it of french origin. My 3 years of high school french were to far behind me to be of assistance. I had to listen closely as it was only used in description of other babies, not Aero. "He is now on rummaere", questioned the nurse? Oh, maybe it is a pharmaceutical? They were talking in particular about Fritz, Aero's toe to toe roommate. Fritz wore a canula (a transparent tubing that provides oxygen delivery). He had been on for quite some time. I know his parents, Heather and James were fervently hoping that his lungs would get stronger soon so Fritz could join Milo, his twin brother, at home. Milo had been sprung a few weeks earlier. That morning the respiratory technician had been fussing at Fritz's bedside. She turned to nurse Carol and replied, "yes, he is on rummaere". Rummaere, rummaere, rummaere...lightbulb flash on and resounding slap to the head. Room air!!! Fritz was now on room air. He was off the oxygen, cannula bye bye, one step closer to  cuddling with Mom, Dad & Milo.

Cryptorchidism? Big word meaning undescended testes. In the laundry list of Aero's challenges at birth, this was at the bottom (that is a really bad pun). Visited urologist today. No testes in the scrotum. What does this mean? Surgery for Aero, again. This is reconnaissance surgery, threading a camera through the belly button to see if they are still in the stomach (where they start in utero). If so, they bring 'em down. If they can't be found, well, that means hormone therapy for Aero before he hits puberty. Your prayers, magic & juju have been so powerful. Please send good vibes that Aero's family jewels are playing hide and seek in his stomach. I have always believed that visualization creates reality. I am envisioning Aero shaving for the 1st time, sneaking my razor. I am hearing Aero with a deeply timbered voice, hairbrush in hand, serenading himself in the mirror. I am envisioning Aero with underarm hair and urging him to buy deodorant! I'll let you know when surgery is scheduled.

comic relief or worry wart?

Late night tonight. Aero did not shut his eyes to dreamland until 9 pm. That is super late for him as he usually retires around 7 pm.  We went for a late afternoon walk and he slept in his ergo carrier with his sweet head against my chest for about an hour. Oops. Late nap = late to bed.

So, that means mommas bedtime will be around midnight. This is why, I have to feed him every half hour after he goes to sleep. Aero does not tolerate large volumes of breast milk via his G.I. tube. He will vomit. In trying to convert Aero to an oral feeder, vomiting is not an experience I want him to have. It would create negative association with oral experiences. Therefore, I do everything I can to mitigate emesis (fancy medical term for vomit, sounds nicer, doesn't it?) If that means feeding him small volume during the day, every three hours, I do it. If that means making up those lost calories at night by feeding him even smaller volumes very frequently, I do it.

Mr. Wiggle Squiggle Worm wore me down tonight with his antics and acrobatics. I had planned to just let him be comic relief and post this video of him reacting to various homemade percussion shakers (dried beans in a empty yogurt cup, ice cream container, etc). He has a very primal reaction whenever I play with them. If he is laying on his back, his eyes get wide, he grins and start to flail his arms and pump his legs. It's cute, funny, a baby Aero disco dance.

 I loaded the video onto my desktop and took a look at it before posting it. It starts out funny and then creates some anxiety-worry for me. At first I think he is just making funny faces. But, one of the faces almost seems strained. I am wondering if he may be experiencing a series of small seizures?

I know, I know...worry wart momma. I admit it. I live in a state of 'other shoe dropping'. Thankfully, it has dissipated somewhat with more time away from the hospital. Yet, it is still a part of me. And, it is my job. I signed up to be Aero's vigilante advocate and I need to question things that might normally be labeled as 'ah, it's nothing'. I will add it to the 9 month check up list.