Best Day Ever!

Savannah is coming home! One day next week we will be a family of 5 under one roof! Thank u Lord!

Pinch me...i think i'm dreaming!

I could shout to the rooftops with excitement and thanks to God! Savannah's GJ feeding tube came in today and they took her right down to fluoro to put it in...she is doing wonderful with it. Setting the feeds up with it was a breeze. Tomorrow I plan on talking to docs regarding discharge plans to see what they have in mind. I know she's had a few breathing issues here lately, but mostly due to secretions and probably discomfort from the NJ feeding tube so I'm curious to see what they say. I do know I will have to receive a crash course in infant CPR and have apnea monitor training before she comes home. But for now all is well and we are one step closer to home! Thank you Jesus!!! Savannah is pretty stoked...she was dancing away tonight shaking her legs and arms every which way! Her physical therapist would be proud...she was doing lots of her bicycling exercise! 😃

Praises

Last night while giving little miss her bath on the weight machine she kept trying to roll over. Of course the side of the machine was blocking her from going completely over which was ticking her off. If any of you have read about PKS this is a huge deal for this momma. She also will push up with her legs and raise her head when on her belly since about 2.5 months old. So, so far so good as far as reaching milestones goes.
Praise God! Go Savannah Go!   
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A Blah Kinda Week

This quote on facebook keeps sticking out to me...talks about dealing with what life has dealt you...either letting it make u a better person or letting it make u bitter. This is something I've been struggling with especially over this past week. Savannah has had a couple of days where she was episode free of drops in heart rate or oxygen. However, tonight she is dropping in the 20s. The secretion med has done its job and thickened her slobbers, but now I'm lost again as to what's causing her to drop her oxygen. It's only occasionally, but at times she's requiring stimulation to recover. Also, I found out earlier this week that her GJ feeding tube can take 2-4 additional weeks to arrive...so disappointing. Just as I was beginning to see the light at the end of this tunnel and have our little girl home...my hopes are shattered. We will get there tho...slowly but surely.

Divided Time

I'm longing for Savannah to be home...longing to just be a "normal" family and have all my kiddos under one roof. It gets more and more difficult trying to make sure I give Brayden and Alayna the attention they deserve and are used to, all the while knowing Savannah needs her momma too. Please pray for those NICU families like us longing for the normalcy of life we all once knew. Please pray for the families of singletons also...there are so many it seems right now like us...waiting on one little thing to get home.
Praying that Savannah's GJ feeding tube comes in this week and praying it resolves any breathing/reflux issues.
Praying that this new secretion med she's on will benefit her rather than make it worse on her. She is known for her excessive amount of oral secretions, so she has been put on a med to help thicken it/dry it up. It seems to me its not helped as expected, so will be discussing dosage changes with docs.

Pure Sweetness

Well I was going to share the adorable pic from Brayden's first time meeting his sis and her 3 month pics, but the pic uploader has changed.  You can see our family pic on Jon's Facebook tho.  Brayden helped decorate her bed, showed her the stuffed animals she has and asked if he could touch her which ended up being a poke in the arm.  She weighs a whopping 10 lbs., 12 oz. now.   Her feeds were lowered back to 28 mL because she was having excess formula coming back out of NJ and she was getting a little too chunky sooner than expected.  Yesterday they put her on Prilosec due to some stomach irritation which has helped.  She also has not had too many issues with her breathing.  And she hates a poopy diaper.  Today she fussed at me for leaving...cried once I put her back to bed and again when I raised her bed rail.  Needless to say, I stayed a little longer.  

okay...so maybe this will be harder than i thought

Got home from work to shower the germs away...spent a few minutes with Brayden and Alayna...told them both bye that I was going to see their sissy...Brayden gives me a sad face and Alayna cries hysterically...go see Savannah who is acting up a bit but nothing out of the ordinary...home to sleep and start all over again tomorrow...insert huge sigh 😡


But I'm thankful...thankful God gave me a second burst of energy to get to Louisville and back safely and oh so thankful I found out from doc tonight that Savannah's GJ tube has been ordered!!! May take a week to get here tho but I am stoked it's at least been ordered!


I can do this...God gives me strength I never knew I had and a wonderful support system!

Success

First day back to work was great...a nursing home full of awesome co workers makes it a lot easier! Brayden finishes up tball this week so I made it to his game...but didn't get to travel to see miss Savannah. She behaved her little self today though. All blood work came back good so they are only going to check it every 2 weeks now. And her main docs are going to sit down and have a discussion with surgery hopefully this week to determine when placement of GJ tube will happen. I have got to see her tomorrow...just something about being back at work makes me miss her that much more. Even more ready to have her home now! Thank you all for the continued prayers!

Back 2 Work

This is how Savannah reacted when I told her I had to return to work tomorrow.  😊 JK!

Update

Savannah has met her new feed goal of 30 mL per hour with no issues. Docs are going to speak with surgery next week to find out when they will want to put her GJ tube in. It will also have to be special ordered because the ones they have in stock are usually put in bigger kiddos. She still requires her oxygen.
I have ran myself to death these past couple of weeks trying to get our house more ready for her to come home to. 😊