Saying “No” to No

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I recently read that the average child hears the word “no” roughly 40,000 times by the age of five.That’s 40,000 “No’s” before they even start the first grade. On the contrary, the average child only hears “yes” 5,000 times by the exact same age. That’s eight times as many no’s to yes’s. Now understandably the average 5 year old is probably full of mischief and thus needs to be told “No!” Yet I just wonder what affect all the “no’s” have on the child as they grow older.

Don’t do that! Don’t touch that! Don’t say that! Don’t talk to strangers! Don’t cross the street! No… No…. No…

Emilie’s only seven months old and I can already recount the number of times I’ve told her “no.” Don’t scratch my face Emilie. Don’t spit your milk out Emilie. Don’t hit yourself with your toy Emilie. Don’t look at the TV Emilie. No… No… No…. 

Yet the energy it requires to affirm her with “yes’s” is harder to come by. But I’m seeing how significantly more important it is to affirm with positive reinforcement.

Now I’m sure there are some seasoned parents out there who are looking at this newbie and saying “this young father has no idea what he’s talking about!”… And you’re probably right, I don’t. But just indulge me for a minute.  I’m not suggesting that telling your children “no” is a bad thing. As a parent, my motto is similar to that of the police… “To protect and serve.” And part of protecting is setting clear boundaries and reinforcing those boundaries with consequences.

I’m only suggesting that while I establish boundaries with “no’s” I must be just as intentional to affirm her with “yes’s”  For example: when I say, “Emilie don’t spit your food out,” I need to immediately follow it up with “Emilie food is meant for your tummy. When you spit it out your tummy gets lonely cause there’s no food down there for it to play with. Lets give your tummy something to play with.”

Now granted, the later is much more time intensive and I could save so much energy by just saying, “Don’t spit your food out.” However, I think something is lost when we lead our children through life by telling them “no.”

Compounding over time, these “no’s” dim our children’s vision to the endless possibilities life presents. They then view life through the lens of what they can’t do, suffocating the creative genius God has placed within them.  On some level the average adult struggles with self-defeating thoughts. “I’m not smart enough… I’m not cute enough…” And I just believe that the roots of these thoughts may be found in the 40,000 no’s we were told growing up.

Simply put, I don’t think Holly and I will be able to drastically change the 40,000 “No’s” Emilie will hear. We’re her parents and we must set boundaries. But we can change the number of “Yes’s” she  hears. So for every “no” may it be followed by a “yes.” And may this impact her view of life and ulitmately change how she views herself. 

Update: Helmet and Hands

So it looks like Emilie will need a helmet, or what they call a cranial remolding orthosis.  In October Holly and I began expressing concern to her doctors about the long narrow shape of her head. After several follow up appointments and a few trips to LA she was diagnosed with scaphocephaly (i.e. a long narrow head), which is a result of the premature fusion of the sutures in her skull.  While there’s no 100% way of knowing why this happened, we believe it’s related to how rapidly her head size decreased after her vp shunt was placed. Consequently the sutures in her skull fused together (the doctors believe), leaving her with a long narrow head shape that could not be remolded by changing her sleep position or tummy-time alone.

photo 1The team of doctors we initially visited believed all her sutures had fused, leaving surgery as her only option. However, a ct scan of her skull revealed only one suture was fused. This leaves the door open for a helmet as the best non-surgical solution.  Yet it takes a helmet 4-6 weeks to arrive, during which time all the sutures could fuse, bringing us back to surgery. And so, we’ve been praying. Praying that her sutures would not fuse and that the helmet would have the time it needs to correct her head shape.

Certain studies show that one’s head shape can have some bearing on brain function and ability. However, in Emilie’s case, the doctors are certain that her condition is purely cosmetic. While we do desire Emilie to have a symmetrical head shape, we are not eager to subject her to a major carniofacial surgery just to correct something cosmetic. So Holly and I are placing it in the Lord’s hands and looking to Him for divine movement in this circumstance much like every other.

Emilie is hitting her milestones. She’s begun rolling over from front to back… it actually looks more like a collapse, but I credit it to her as a rollover. She holds her head steady and she’s able to sit up more and more each day. She reaches out claiming anything within her grasp, and her favorite food isn’t actually food at all. It’s her fingers, of which she’s happy to share with anyone close enough, four saliva-soaked fingers which she gnaws on about every 5-10 minutes. One of her favorite activities is to stand up while I’m holding her hands.

Emilie strongly favors her right side, which has caused us some concern. Thus she stills sees an occupational therapist once a week.  She opens and uses her left hand if compelled, but will  quickly revert back to the right side when given the opportunity. 

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The OT has recommended that we restrict her right hand, forcing her to use her left. It’s as though she recognizes she has a left hand, but simply has no interest in it.

As you can imagine, Emilie’s need for a helmet and her use of her left hand are at the top of our prayer list. We know that God has brought us this far, and we are confidant that whatever challenges we may face ahead God has already “thought that thing out and thought that thing through.”

Update: The Journey Continues

What a journey!

We’ve been home for almost two months now. Thats two months of sleepless nights, dirty diapers, sterilizing bottles, singing lullabies, and cleaning up vomit. And we Praise God for it ALL! 

photo 4Overall Emilie has done very well. She now weighs 10lbs 10 ounces. Every day she’s growing more alert. Just within the last week her baby talk has increased significantly. We can’t say a word to her without her cutting us off.  She’s gaining more and more head, neck, and back control.  She’s begun to reach out and grab things. Her leg action is strong and steady, kicking anything that comes across her path. Every morning she wakes up with the brightest smile like she’s glad to be alive. She sleeps hard and plays often.  Developmentally she’s on track for her gestational age, and for that we give Him praise! 

Emilie has six doctors that she’s sees monthly:  a primary pediatrician for her regular care, a high risk neonatologist who monitors her growth and development, an occupational therapist who assesses her motor skills, a gastroenterologist who evaluates her nutritional needs, a neurologist who monitors brain growth, and a neurosurgeon who oversees the proper functioning of her shunt. Not to mention she attends a five hour sleep study every six weeks. As you can see Emilie already has us running her around on a very busy schedule. 

photo 3Emilie is not the worlds greatest eater. In fact, if she had it her way she probably would not eat at all. This has been the one struggle for Holly and I. We know all too well that a baby’s growth and development hinges on their getting enough nutrition. Emilie should be eating between 3 to 4 ounces six times a day. However she’s eating closer to 1 to 2 ounces six times a day. When feeding her we’ve been very intentional to not force her, lest she develop nipple aversion. Yet it pains us to know that she needs more and there is nothing we can do. Her gastroenterologist says that her nutritional consumption is not all bad, though she is at the low end of the spectrum. He doesn’t feel a g-tube is necessary at this point, however he is closely monitoring her. We’ve tried different nipples, bottles, feeding positions and even feeding times yet nothing seems to make a difference. Next week we’ll be trying a non-dairy formula to see if that helps. But even still, our resolve is to yet again trust that God is working it all out for her good.  

Indeed this has been a journey. Our faith has not wavered. There are too many promises in God’s word and He is too good for us to believe anything other than what He has promised. And as with any journey in life, there are highs and lows, and even moments of protests. But if you remain steadfast and diligent, not letting go of His hand, He will see you through.

Philippians 1:6 “being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.”

UPDATE: Still Pressing

The last three weeks have been quite a challenge. Overall Emilie is doing well. The surgery to place the shunt was successful, and it’s working well. There have been no infections or other complications with it… Praise the Lord!  Last week she did suffer from a minor cold, but has since recovered.

photo 5The challenge is specifically related to her feedings. For the last three weeks, Holly and I have been praying and pushing for her to be released. Her breathing is stable, the hydrocephalous has been addressed,  her pooh smells AWFUL and comes out frequently, she now weighs 8lbs 13 ounces and is slowly (but consistently) gaining weight, and her overall health is good. Based on our parental insight we feel there is  no further reason for her to remain hospitalized.

The doctors on the other hand do not agree. They feel  Emilie needs a g-tube (gastrostomy tube) because she’s not consistently nippling all of her food. Of the 510 ML she’s suppose to eat every day, she nipples between 480-490ML. Normally they would gavage whatever is left after she nipples, however last week her NG tube came out and I have since persuaded the nurses to not put it back in. Gratefully we’ve had a few great nurses who have been willing to work with us. :-) 

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Though she has been gaining weight, it has been slower than what the doctors feel comfortable with. Consequently they not so subtly suggest that she needs this g-tube. In theory Holly and I are not totally against the g-tube. We just feel that she deserves every chance to prove her ability to eat before we jump to surgically placing a hole in her stomach. Further, we feel having her at home under our care will provide the best chance for her to succeed. If she’s still not gaining substantial weight and eating well after a few weeks at home, we will then entertain other options.

On Tuesday the doctors told us that she can potentially be discharged today, Friday Sept 6th… depending on how she does over these last few days.  She eats every 4 hours (12am, 4am, 8am, 12pm, 4pm, 8pm), and so Holly and I have made sure we’re with her during these times to feed her.

I must be honest, its been both spiritually, emotionally, and physically exhausting… especially emotionally. We’ve been walking this journey for 143 days now and the last 30 days have really taken their toll. We’re ready for this to be over. We’re ready for her to be home. Yet we recognize she is God’s hands, and so we continue to press.  We have not lost faith nor are we giving in.  We still believe the effectual fervent prayers of the righteous avail much. We still believe man doesn’t live by bread alone. We still believe every promise of God is yes and amen. We still believe this journey was ordained by God for our good and His glory. And we still believe she is healed!

Update: Successful Surgery

Emilie just returned from surgery. The doctor informed us that everything went as expected. There were no complications and it was uneventful, which is a good thing!

They had to reintubate her for the surgery, but the goal is to extubate her tomorrow after a few scans. Right now she is resting peacefully.

We’re now believing God that the shunt will work properly with no need for revisions or replacements.

Thank you so much for all your prayers!!

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