Part 2 and pic heavy! :)

Well, as you can tell, my well meaning "every day" post didn't happened! Instead everyone got this cold that won't go away, Thanksgiving came and went as did my oldest son's birthday! He is six now, where has the time gone?!

So, in honor of his 6th year here I will share the rest of his story.

Where was I....oh yes, we were in the hospital, our third stay with him thus far. May I just say that this was 6 years ago and understanding of MSPI, though it's not a common diagnosis overall, was still in it's infancy. It is more common in the heartland of the US than anywhere else in the world! Does that say something about our diet?!

Anyway, let me tell you what the treatment for MSPI was back then around here. It was an order to stop breast feeding. It was putting my son on an IV ONLY for 48 whole hours. An IV of just clear liquids, they contain no calories, no real sustenance at all. Just some vitamins and electrolytes. So, for two whole days I had to hold a starving baby and somehow pray that his hunger; his tummy pains would go away. I prayed that his weight loss would not be too terrible too. As he was already severely underweight.  Then we tried one formula, only allowed to give him mere ounces ever few hours. Again, having to watch your child starve is not an easy thing to do. If the formula did not take you would know as the SCREAMING would start, and there would be blood in his stool. So, you would again have to go back to nothing but an IV for two days on a child that was already starved.

During this time he was also diagnosed with reflux. And began medication for it.

We got to our third formula and he seemed to be adjusting well or maybe I convinced myself because watching him suffer for two days with no food, it was almost unbearable. He was not screaming though, he was not fussing all the time and when he was I couldn't blame him, being as hungry as he must've been. So, after about a week and a half of this we were released to go home. Where I just thought, hoped, prayed that all would be ok. We were released under the primary care of a gastro-intestinal doctor. A pioneer in reflux and MSPI research. The best in the region. We were to check in weekly with weights and any concerns.

So, we did just that. Checked in weekly with weights, that were not getting any bigger and every so often loosing an ounce or two. I would call with concerns of his stools and the doctor would reassure me that this stools were normal for an MSPI baby. Since no formula is entirely clear of milk or soy proteins, this was how their diaper was to look. I was still a new mom and though the voice in the back of my head told me otherwise, I ignored it. Thinking doctors know best.

Almost a month to the day, I was changing his diaper and found yet again, blood in his stool. Back to the hospital we went. This time, he'd dropped a lot of weight since his last visit and though he was near 4 months old, he was still in newborn clothes!

This visit was different. There was an air around the nursing staff, who'd now been around him for his whole life, that worried me.

Remembering that time is hard for me, for many reasons. One, it is severely emotional for me, knowing that this is the visit, he could've died.. Two, because though I would hold him for hours on end, attend to his every need and play the mother role to a T, I still was not emotionally attached to him. Which as a mother, makes one feel very terrible. I know now that this was because of all that was going on with him, the emotional toll on top of having a new baby, struggling with hormones and my new roll. Never really being allowed to bond with him as a normal mother would. I understand that this can easily account for why I didn't fully bond with him but, the guilt of it, still kills me.

For months after he came home and the months he was in the hospital, I had refused to call him by his name. Instead choosing to call him by some nickname I'd made up for him. Afraid that if I'd say his name, somehow that would make him more real and hurt more if he didn't make it.

So, the last visit, was terrible for everyone that knew him, knew us and for my family. It was days of IV starvation, and this time he was put on an NG feeding tube and pump. NG meaning nasal gastric, which simply means that it went down his nose, throat and into his tummy. He was hooked to a 24/7 pump, which automatically pumped the prescribed amount of formula into his tummy.

This was the worst thing ever. He went from 2 days of IV starvation to quite literally, drips of formula into his tummy per hour! Single drops!!! The increment increased every few days until the symptoms would start again and the cycle of starvation would begin again. I say this though, as if the simple drips were sustaining him. The truth is, even with the drips, he was starving; he was dying.

Every time they would try a new formula, it would only be days before we'd have to start again. All the while, his diapers were increasingly disgusting and worrisome. He began dropping weight at an alarming rate and considering he had very little to work with, it began to take it's toll on his body. He lost the ability to cry first, replaced instead by this, pathetic sounding whimper. A sound that will haunt me for as long as I live. He then lost the ability to lift his left leg, followed by his arms and other leg and then the ability to hold his head up. His skin began to hang off of him. His face began to resemble that of a skeleton. Even now I tear up at the thought of it.

Right before the day he lost enough weight to hit 8lbs even, a mere 5 oz over his birth weight, the pediatrician stood his ground and took over the case. He came to me and told me that they could do a surgical procedure and put a port into his tummy for a direct line but, that they didn't think he'd survive. It was my choice though. He told me to have him baptized just in case. He listened to me about the stools and did a test. It came back that he had C. Diff. Don't ask me the proper name for it, I can't even say it, let alone spell it! I chose to forgo the port and stick with the NG tube but, most importantly, when the pediatrician asked if I trusted him enough to take over, I let him. I had nothing else to loose and watching my son starve to death was becoming more than I could take.

He was put on a regime of strong antibiotics. And since we'd finally found a formula he could tolerate, the pediatrician increased the ridiculous drips over the course of several hours to an ounce every few hours. The next day when he hit the 8 lbs though, I remember dropping to my knees in the hall outside the room. The nurses held me up and held onto me. I refused to go back into the room though. I didn't want him to see me crying to think that I'd given up on him. Even though I'd secretly prayed that if someone upstairs was going to take him, then take him now so he would not have to suffer. Something like that is incredibly hard to do as a mother, attached or not to your child. To get to that point, it's heart wrenching and even now, as I type this, the tears pour down. I would never wish that on any mother.

That was the worst part of the whole thing, over the course of he next few days the formula was increased, he began to stop loosing and weight and maintaining it. He started to smile and act a bit like a baby should.

When he finally began putting on ounces, we were allowed to take him home, once again reassured that this would be his last time there.

Here is his first day home, playing with his snack tray in his carseat. That toy was the only thing he would attempt to play with! Still weak, he would swing his right arm over the spinning snail and watch it spin.

 Below is a picture of him the very first time I put him in the crib that had patiently waited months for him to sleep in and still would for many more. His NG tube set up did not allow him to sleep in the crib. He was hooked up 24/7 so he could've gotten tangled up in and choked to death if not put someplace safe.

Another month later, still small as can be and in summer clothes. This was a big deal to me as I never liked to let people see him like that because they would stare.

He was almost 9 months old when he yanked the tube out on his own for the last time. He was chubby and healthy then.

He's not been without his struggles, Sensory Processing Disorder, OCD, ADHD, Tourette Syndrome, Explosive Behavior Disorder, anxiety, hearing loss, etc. but, he's come through it all! There is not a day that goes by, even on the days with meltdowns that I don't thank the heavens that he is here with me. I don't take one smile, laugh, milestone, etc for granted and I hope I never do. He's gone through all of this, all that life has thrown at him and he's still here. He's fought tooth and nail to be here.

This is him now! My adorable, cheesy, hard to handle, sweet, kind, exhausting, funny, smart, wonderful little 6 year old man!

Other than being a bit small for his age, you'd never know. Never. On the days when I cannot get myself to look on the bright side, when getting out of bed seems to be too much to do, when I do not want to do another IEP, specialist or doctor's appointment, I think of all he's gone through, all he will and I get off of my pity pot and just do it.