Monday, March 18, 2013

One Year Later Part 5

Whew! Sorry this is SO late!.
Today is day 5 and the final part in my week long story of my son's 1st year of life. You can read the first four parts by clicking here:

getting ready to come home.

     It's funny I thought bringing Josiah home wouldn't be that big of a deal. Ha! Was I wrong! *smile* I was planning on coming alone with the girls and packing him and his stuff up and leaving. Praise God. my mom offered to come with us!!! First off, once again they want to go over everything, finish getting him ready and fed for the trip. There is ALL kinds of paper work to go over and sign. Our car seat didn't pass the inspection and I kind of panicked because we couldn't afford to buy a new one on our way to the hospital. The hospital provided a free one.Thank you Lord! The's one for bigger babies and sat straight up. And I me STRAIGHT up. Even my girls car seats recline some what. It took me FOREVER to get it buckled in, because it had to face backward and the straps weren't long enough. Augh! Then it took several trips and finally my van was FULL of baby items, oxygen tanks, and medical equipment. A couple of hours later, we were ready to leave! I was so excited and nervous!!

Our very own oximeter

Our hospital grade suction machine.
Josiah's new feeding machine.

     With my mom and a nurses to help we got the kids down to the car. It was freezing out and Josiah couldn't breath in the cold hair. So I was trying to hurry and get everyone settled so we could be on our way. WELL....the straps were too tight and I couldn't get him in all the way. I was already worried because no one knew how he'd handle driving in the car.Would his oxygen drop? Would he scream? Would he go into distress and stop breathing? I started to get very upset at that point and was in tears. I couldn't figure out how to loosen the straps!! He looked so uncomfortable sitting straight up like that and I was worried he would have trouble breathing. I finally got him strapped in good enough to drive home. It was the LONGEST drive home of my life!!

Josiah at home. His special sling is above him.
     We finally got home and my dad was there to help me unload the car and get us settled in. I am so thankful to the Lord for his help! Josiah started screaming and I couldn't get him to stop. It took my dad many, many strips to unload the car (we live on the second floor). By the time he was done, there where boxes piled up every where! It finally found some items that I would need for the night. Such as, his feeding machine, oxygen, monitor, and his special formula and meds. I really wanted and needed a good cry! But, I didn't want to upset the girls. It was overwhelming to say the least and a long night!! But we survived! *smile*

“Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.” Proverbs 3:5-6

     When Josiah came home he was still on oxygen and strapped to a monitor to check his heart rate and oxygen level. He was on a G-tube feeding machine and a STRICT eating and medicine schedule. He had to eat every 3 hours, 6am, 9am, 12pm, 3pm, 6pm, 9pm, 12am and repeat. *smile* It was exhausting and I started to sleep through my alarm at night and would miss feeds. Because, start the feed, say at 9pm. Then the machine goes off an hour later to say it's done and you have to get up and shut it off. Then two hours later at 12 you have to start it again.   There was a lot to do and a lot to learn. We didn't leave the house expect for doctor appointments (which there where MANY of those).It took a while to get use to traveling with Josiah and all his equipment when we would head into Boston. Sometime's it felt like we lived there! But it got easier as time went on.

Grammy and Naomi checking on Josiah.

     During that first winter Josiah got sick once and almost had to be hospitalized (he was so fragile and a cold could be deadly). It was nerve racking. But I have gotten use to what the warning signs are and not to panic so quickly. He has to sleep elevated and had a special pillow that elevates his mattress  As time has gone on I have learned that it's better for him to sleep in his little reclining seat because it doesn't irritate his feeding tube site. We had to have the site cauterized at one point, because it was so irritated! I have also learned not to worry so quickly when it does become irritated and he to treat and help heal it.

Dakota, Dad, and Josiah.

     We've had lots of help, from visiting nurses, to therapists and feeding specialist, to all kinds of different doctors and nutritionists. Josiah finally came off the oxygen in August and has FINALLY gained weight after losing it and then getting "stuck" at that weight. He had 4 different surgeries, but each time there was more then one surgery scheduled for that day. Now that we are done with surgeries for a while, we have been able to start teaching him how to orally eat. Praise God!!
"Rock on"

A VERY tired Mommy and Josiah.


        The Lord is merciful and mighty to save! He has given us a son with such a sweet disposition and fighting spirit. People have wondered why God has given us so much to handle as a family. I don’t have the answer to that question, all I know is that God promises to not give us more then we can handle. Throughout everything one of my biggest concerns was pointing the way back to Christ through my actions and attitudes. When we weren't sure if Josiah would make it or not, I wanted the medical world to know that we wanted him to live and would fight for that precious life, but ultimately God is in control and we would submit to His will. I am so thankful that God has answered our prayers and allowed our son to live!

before first lip surgery.
Before the palate surgery.

"Beware of fretting, murmuring, complaining, and giving way to an impatient spirit. Regard your sickness as a blessing in disguise – a good and not an evil – a friend and not an enemy. No doubt we should all prefer to learn spiritual lessons in the school of ease and not under the rod. But rest assured that God knows better than we do how to teach us. The light of the last day will show you that there was a meaning and a “need be” in all your bodily ailments. The lessons that we learn on a sick-bed, when we are shut out from the world, are often lessons which we should never learn elsewhere. "

~ J.C. Ryle

I loved that quote, what a great reminder whether it's you that is not well or a child, God is using it to sanctified.

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