Noah’s First Week Home

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This past week has been a whirlwind! We came home last Monday, February 16th, 2015 when Noah Bear was 21 days old. Do you know how hard we worked to convince those people Noah was ready? Where should I start? Ohhhh goodness…. first off, we convinced  them (which I may have already told you) to take him off his NG Tube. In an effort to convince us that he needed the G-tube placed into his stomach, they agreed. 48 hours later, we were home. We roomed in with our son four nights in a row when most families stay one in an attempt to show we were capable. A new doctor came around Monday morning, and we told her the doctor before her told us there was no reason for us to be there. We questioned why he would eat with us and not their nurses.

We were discharged at 3:47pm Monday February 16th after 21 long days in NICU. So, with that, we are home! Scars, machines, diapers, spit up, funny noises, awesome faces, and lots of love …. we are home!

He was discharged at 7lb 10oz. Two oz under birth weight. Friday morning we went for a weight check and first pediatrician visit, and he weighed 7lb 14oz! Guess what else? THIS mama, while she agreed to fortify milk for an additional week, did NOT wake herself and baby to feed at night as she was commanded. I followed my gut, again. I needed sleep. Kara needed sleep. Baby needed sleep. I let him rest; what NICU could not and would not do. He tells us when he’s hungry – and he’s beyond capable! One more thing he “wasn’t suppose to be able” to do.

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{{My scars tell a story, a story of the brave and fearless! A fighter!}}

We’ve had two visits with in-home Physical Therapy, and our PT is working with our pediatrician on orders for Occupational and Speech to come in-home as well. Good news, though! At this point, he isn’t behind in anything. There is nothing to “work on” that he should be doing but isn’t, yet.

Today we went for a visit with Nutrition & Lactation.

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First off, there is hope he can eventually nurse. There are some set backs that may prevent him from exclusively nursing, but as long as he’s exclusively breast fed and getting what is best for him, I’m okay with that.  To be honest, this whole formula thing that my gut told me I was wrong about to start with … well, it was wrong! To be honest, I haven’t shoved it down his throat as we were told told. However, he has gotten the fortified milk several times a day. I’m learning now though, mommy gut was right. So, mommies … ALWAYS trust yours! If you don’t know what to do, that’s okay – tell the doctors. But if something isn’t sitting right with you….. don’t cave. It’s not usually the “only” option.

Today we officially start reducing how much fortified milk he gets, nursing or not. His gut flora isn’t right for many reasons (c-section arrival, antibiotics with surgery, no nursing for hours, NICU enviornment, need I continue?). So, tonight we started a probiotic for him. He’s not doing well with the the cow-milk based fortification and his stool has evidence of blood and his demeanor has evidence of upset and uncomfortable-ness, if that is even a word. SOOO…. we’re taking him off. Completely! YAY!

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{{and NO! this does NOT mean he’s lactose intolerant or will have any food sensativities as a child or adult! all this means is that babies are meant to have mommy milk 🙂 }}

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Moving on….

The soft(?) pallet (the roof of his mouth) has a “groove” or dip up in it just behind the gum line. He doesn’t have a cleft lip or pallet, nor does he have tounge and lip tie… but what he does have is typical in those babies. I’m sorry I’m not sure if I wasn’t told, or can’t remember, the official name of what he does have. It could cause long-term issues or he could learn to deal with it no issues whatsoever. All it is doing currently is triggering a sensory issue that makes him not want to accept anything in his mouth at all. However, in all honesty… that’s not completely an anatomical issue. Its also a learned behavior. The way it was described to me. …

In NICU he had tubes taped, and tape ripped off, his cheeks… he was force fed every 3 hours… other than Josh and I he wasn’t cuddled and caressed…. he was poked and prodded. He learned that sights, smells, sounds, tastes, and touches coming towards him were negative … not pleasant. So his behavior rejects them now. He hiccups, he sneezes, his skin malts, he pushes away and rejects…. we have to reteach him that his senses are to bring him pleasure as well. Obviously one month olds are not diagnosed SPD…. however his symptoms are typical of SPD patients.

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For eating, He accepts the hospital bottles, and the LC said if we want to move away from those as he starts taking more per feeding, Dr. Brown’s was our best bet… although she couldn’t promise he’d graciously accept those either. Her goal right now is to get him to comfort nurse, not meal-nurse because with the sensory issues he’s “developed and learned in NICU”, that will be a huge feat within itself, and may provide us peace at night if he can get just enough to curb the hunger edge where we can sleep and nurse instead of fixing a bottle.

This learned behavior is long-term, and while I may not ever be an exclusive nurser despite being an EBF’er, it’s good I’m wanting to nurse him bc we’re getting the “early jump” on what could develop SPD and we would not know it existed if I wasn’t trying to nurse him.

So where do we go from here? I’ll call another speech pathologist who specializes with infants and back to breast and get an appointment there. once I have that appointment made, I’ll call my pediatrician and have a referral faxed over so insurance can cover it.

Noah’s Story
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race
Steps Toward Home

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