Our miracle RT is 6 months old today!

He has been doing great! 

Bottle feeding every 3 hours still. Only using his GTube for midnight 3am and 6am feeds. 

Saw Gastro Doctor yesterday and pulmonologists on 17th and pediatrician on 16th. Gastro Dr. said we can pull his gtube once we get to 3 months of not using his gtube at all and still gaining weight! He isn’t awake enough to properly feed midnight to 6am but maybe when we get more settled it will be easier to try and do that. 

Weighed him at the doctors yesterday! 

Got him a play mat, and a chair today! 

Biggest issue so far since arriving in FL has been insurance and figuring out how to get RT his Synagis shot to help protect him from RSV. 

He had it twice in Seattle but down here we are running into some issues. Apparently if insurance doesn’t cover it its a whopping $3,328 per shot (they last 28 days) 

We will get it figured out. Just some unneeded stress on top of everything.

Looking for a place to live now too. Realtor is helping. We hit 12 houses in 2 days. More set up for Monday. 

A couple good prospects! One in particular checks all the boxes but is the 2nd most expensive we looked at. 

Cheapest one we liked already is pending on a sale. A few others already sold.

Houses move quick.

Video waiting for the Dr.​

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Sitting in his new chair with his binky bear! Look at his big feet!

It was odd to say goodbye to Sitka and friends. It will be missed. We will be back. Someday.

The person checking my bags declared I had the most diverse luggage she has ever seen. A cooler full of frozen breast milk, and a pelican case full of 48lbs of ammo, another with ways to dispense of said 48lbs.

Got a nice thurough frisking going through security. I don’t think the machine liked the glass jar I have that is full of sand. Went through both of my carry on bags. Multiple X-rays on my belongings, swabs for residue. Opened every binder.(I have lots of paperwork). Can’t say I blame them after the happenings of the day. I thanked them for being diligent and doing their job.

It has been 9 days since I have seen RT, it feels like forever!

7 hour layover in Seattle.

I am very excited, when I do arrive. I will have to shower and change before seeing him. Too many sick people on the plane! Glad we are not flying with him! 

Hopefully he isn’t angry at me for being gone.

Then we will be off. A nearly 3000 mile journey ahead of us! 

A glorious odyssey awaits.

Venitians say only slaves paddle sittin down.

Green, the color of life, renewal, nature, and energy, is associated with meanings of growth, harmony, freshness, safety, fertility

Some confusing emotions coming up during the repainting of the babies bedroom. Continue reading “January 3rd 2016 Painting the walls White” →

Just got dropped off at the airport to fly back to AK and deal with checking out and dealing with the house getting ready for the move to Florida.

Bags checked.

It was odd watching mom and baby drive off. 

Hopefully RT behaves, it’s lots for mom to do. But thankfully family is around to help. 

Hopefully I don’t miss too much important first moments.

I shouldent be gone too long. Once everything is done that can be done I have to fly back down and we need to get across to Florida in time for the appointments next month. 

Through security. 

Love you RT and mom. 

More pictures to come eventually!

Merry christmas! What a blessing to be able to get home by Christmas and have RT meet the Great Grandmothers!

Given a 30% chance of surviving just 30 days of life. On his second day of life we found out he had a level 4 brain bleed (IVH) on one half of his brain. Doctors had to discuss the range of possible damage from zero control of 1/2 of his body, cerebral palsy, or just learning disabilities on top of the challenges of being born at 23 weeks gestation. We were asked several times in the following days and weeks exactly how much we wanted to do to keep Ryan alive. I had to find the words to express how much faith we had in our son and state we couldn’t give up on him, he had no option to give up and neither did we. He made it through the extremely critical first couple days, overcoming many seamingly impassable hurtles.  At just 3.5lbs he survived open chest surgery to shut his PDA. Diagnosed with a rare form of ROP disease, Rush and Plus disease but laser surgery and a later injection saved him from going blind. 13 blood transfusions. Was on almost all the different modes on the ventilator, oscillator, NIV NAVA, CPAP, high flow, low flow, and the nasal cannula and now he’s going home on no respiratory support! Only started eating by mouth 10 days ago and he takes his full feeds whenever he is awake. Such an incredible feat for babies on his similar path. At 5 months and one day, Our 1.5lb now 10lb miracle warrior is starting his life on the outside of the hospital! 

Now to battle RSV /flue season number 1, begin a journey from Washington through California, and then ending in Clearwater Florida.

Discharged at 4565 grams! Those that guessed 10-10.25 congratulation! 10.064 pounds!!

Day was absolutely great! Super busy, all is well! Discharged on December 22nd! Going to update more later today!

Hard to believe RT was born 5 months ago. Have we really been here that long. The days were slow, but the months happened quick. It’s weird how that happens. Continue reading “December 21 2016” →

We had a good night.

Mom came back around 0600 to relieve me. I went back to hotel to take a short nap,  then take grandma to the airport.

She had a great visit with lots of cuddles! Plus she will see him soon!

Light traffic.

Continue reading “December 20th 2016” →