Worlds Worst Blogger At Your Service!

Monday, May 29, 2017

Yup its me the worst blogger ever! but like I've said before this is more or less a diary of harlow's journey.

So where did I leave off, Mostly you guys follow  me on social medias so you pretty much know what is going on but for those of you who don't let me catch you up!

The last time I wrote in here was the night before harlow surgery. It went great she's a little trooper the surgery was a success the acid reflux has been stopped in its tracks as far as I can tell she is no longer having any issues with it. She had a fundo done which is when the wrap the stomach around the esophagus so help keep everything down and where it belongs. The reason for the tube is because since nothing can come up thats including air. So in order to help her burp she needed it but also harlow has been having a really hard time putting on weight so for now she's on continues feeds thru the tube until she's able to gain weight on her own. This is due to her keto diet (see link below)

https://en.wikipedia.org/wiki/Ketogenic_diet

Long story short she can't have sugar... none what so ever so she's forced to gain weight in fat and carbs which is harder then you think. So that has been a huge pain in the ass for quite some time now and caused all this to happen in the first place changing her diet and formulas so many times really messed up her stomach and intestines. But the past Is the past nothing we can do about it now it just would have been nice if the Drs had paid more attention to it...

Our hospital stay lasted another week after her surgery and lets just say I don't miss it but I do I don't miss the hospital or all the scary stuff that goes with it but I do miss the constant help I'm not going to lie. Having her home now has been a huge readjustment. She having the tube makes everything 10x harder because she's constantly being feed thru the tube so I have to take it everywhere I go and I mean everywhere its not horrible its just harder to get ut the door quickly. Second its hard because you have to keep a eye on her and the pump of she's out of food it will just continue to pump air in to her belly and I can't out a whole lot of food her bag because it needs to stay somewhat cool. so as usual my balancing act continues...

Harlow refuses to eat out of a bottle now and wants nothing to do with her binki. For this mama it is very hard to accept because that was the first thing she learned how to do when the Drs said she wouldn't so its hard for me to let it go. She is teething however and some babies don't want to suck because it hurts. she also got thrush (link below)

https://www.babycenter.com/0_thrush-in-babies_92.bc

So if its not one thing its another right?
Harlows Tube is healing good except its protruding out which means the skin on the inside is comping out of the hole its super gross and annoying hopefully it stops cos it is not fun to deal with.

She had her testing done with the therapist last week and she is still at a newborn level at 7 months old its hard to stomach that but at the same time the test doesn't take in to consideration her vision impairment. so the test is really inconclusive. Also everything that happened with her stomach caused a huge delay because she was doing great and at the level she should be at that a normal baby would be at so this is why I'm able to have the faith I do because I know she can do it its just going to take time.

The dr did however say she is having cognitive thoughts which is HUGE! that means she can think. literally ... He explains it as we all take the free way she takes sides streets and stops to smell the roses. she will get there it just will take a little extra time.

Well that is all for now sorry for all my spelling or punctuation mistakes I'm falling asleep lol told ya I wasn't perfect ... <3

Ugh

This photo to everyone is just a entry way but to me it's the path I walked for 9 months every week sometimes twice a week it's the path I walked thinking when I was pregnant how crazy it will be to walk this path with a baby seeing other moms with strollers I walked this path to my first high risk drs appointment and that is when the path no longer was welcoming I started walking this path once a week in fear every time I walked it telling my self I need to breathe I need to stay calm take care of yourself for harlow. This path I swear got longer and longer every time I walked it at the end of this path is where I broke down after harlow was born when they told me all the horrible news about her my legs still numb from the epidural, this path will forever haunt me it gives me chills just walking it having to go get harlow meds because her normal pharmacy is closed running this quick simple errand has so much more attached to it I hate everything about this hospital except her nurse that believed in her and her high risk dr who got me thru it other then that if I never saw this place again I would be grateful this place is my own personal hell...
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