Sunday, June 13, 2010

Celebrating Life

Celebrating a Birth Day!
It's been 5 years since my life had an attack of stress beyond belief. At the beginning of that five is when I found out I was preg with a pregnancy that I wasn't prepared for. Then I miscarried, the next two months was up and down filled with guilt that I hadn't wanted to be preg and then sad that things went wrong ( I even had Aunt Flo visit once in this time frame) and anyway 2 months later I had ultra sounds to find that I was either still pregnant with a twin or got pregnant in between there again and or had a chorionic bleed from the first pregnancy or whatever, it's not something anyone could explain or make heads of. Bottom line there was a viable pregnancy there an I was two months along. What followed is crazy, no lifting, no heavy anything no exercise, cramping intermittent bedrests. My last pregnancy I had to be on med's to stop labor so once I hit a certain place they start that medicine on me again if I cramped to much. Then my blood pressure started to climb, I was sent to bed. Bedrest with only allowance to pee, no stair climbing. So starvation, my kitchen was downstairs ( really I didn't but I did have to do alot they said not to). 6 kids none with a drivers license, we live in a rural area. Then monthly trips to the big Dr. of Perinatalogy 2 hours away. When I was 26 weeks and 6 days along I was life flighted (flying in a helicopter is not fun in that condition) with blood pressures that were out of sight and cramping. I had a headache that would rival a jackhammer with it's pounding. I couldn't open my eyes without seeing a rainbow in the left side of my eye (retina was detaching). They tried to keep me on bedrest for two days more and then decided that it was not going to work at all my kidneys were shutting down and a million more medical terms that I used to could spill out but now I do not care because once they did the c-section (my first after 6 natural births) things started to switch back to normal for me.

Warning if you are sensitive to photos with needles and tubing of life support in children do not go on.

Well now I am ok recovering and able to return to normal body function but I am going to have to have a lifetime experience with the NICU. The short end of a very long 7 1/2 month hospital stay is that we have a little guy who is a fighter and wanted to be on this earth at all costs. He was 1lbs 14 oz fit inside the palm of your hand and did everything on his own the first 24 hours then needed a tiny bit of blow by air to help him maintain his oxygen levels.
A few days old.
He had a picc line infiltrate TPN( layman term) sugar water into his lung cavity on the right side because the vena cava that it had been threaded into eroded. They stuck a needle in to pull off the fluid and he turned around in 24 hours and was back to ok and simply growing. Well the lung was damaged and once down the road he spit up and sucked it into his lungs and pneumonia hit 4 different times to be exact. It's what they call a roller coaster ride inside a NICU and you are never sure which kind of ride your going to get or the direction it's going to take you. Equipment out the wazoo surrounds you.
Ventilator tubing down his throat.
Tracheotomy done to remove tubing from throat after 3 months of it. He was getting good at flipping the tubing out with his tongue which is life threatening if you are struggling to breath correctly.
He ended up on a massive ventilator to a Jet vent to a Tracheotomy and Jet vent (which was never done before with a trach) and iNO that helped to vasculate his lung walls so he could grow new tissue. This iNO had never been used on a preemie in that hospital and was a last ditch effort to save him. It worked shock of all shock just when they were getting ready to send us off home with all that kind of equipment he couldn't tolerate the ventilators so they trialed and he got off the vent. Then a swallow study test to see if he could eat or suck a bottle YES we are allowed, so training started on that. Nothing in the form of food had been in his mouth except our continual providing of his binky so that maybe some day he could nurse.
Another month of watching and the best Christmas present of my life they told us on that very day that they wanted to see if they could remove the trach. Traches on babies are not usually removed until about 5 years of age so this was shocking and a first for that hospital he was 7 months old. His Daddy traveled all the way home to work one day and then returned to find his baby free from the big elephant tubing that had sent air into his lungs through the trach attachment.

The kids were ecstatic to hold him and really hear his little laughing sounds. The sound did scare him so he didn't do to much of it at first. Tyrell and J were very relived because their whole Christmas vacation had been centered around training them on how to clean and switch out a trach. Neither one wanted to ever grow up and be a nurse they said after having to have their brothers very life depend on their ability to pass that tiny tube into the opening of his neck and strap it up all while he wiggled and would not hold still. The kids themselves were only 16 and 13, young to have to handle that huge a job. His Nana was beyond grateful to not ever have to train on how to do the change out of a trach. He went from sorta sucking a bottle to not sucking at all again and nursing slowly went from a tiny success to zilch nota never going to happen at all. The pressures from having to coordinate breathing and sucking and swallowing were to hard for him and he stressed out. But we did get to come home with 3 liter flow of oxygen and a feeding tube, breathing treatments, and a back up suction machine. Then alone Mom fun began because it was all me and whatever the kids could help with and when the Dad was around his ability to help out. But that's for another day of agenda and how to teach a non eating child to eat. Anyway it's been 4 years and he is amazing even if I am the one that gained all the weight that he should have. We are so very blessed and I just want to wish him tons more fun filled days with his crazy brothers and one pretty sister.
Tiny start out.
Big fat finish when fed through a tube.
Four years old, many a bumps along the way but I only have to wear the oxygen at night when I sleep or get sick during the day. We have come a long way baby!

1 comment:

  1. What an amazing miracle! And what a traumatic experience for you! You're doing great!

    I can't believe all that you and your kids have learned and gone through to get to this point. That must have been expensive, taxing and just plain exhausting.

    You don't go being hard on yourself because you gained weight. Going through so much trauma is impossible to do in a completley healthy way. Those that don't gain weight are dealing with something else that is just as horrible to take care of. It's just too much to humanly process at once.