Turning Of The Tides

We may be getting our hopes up here BUT we think we are at a crossroads here with Liam and oral eating. It's a turning of the tides. A huge step. 

Liam hasn't been tolerating his continuos for about a week now. I've tried lowering the calorie content and lowering the rate and it hasn't worked. He wakes up screaming in pain and this continues until I stop the feed. After the feed stops he sleeps without waking up at all. 

I tried Milk of magnesia in hopes that it would calm his stomach but it did nothing. I tried Motrin for pain but it only did so much. 

The last couple of days Liam has been making up the calories by eating them! Yes folks I said EATING!! 

So Liam hasn't been gaining it loosing any weight on his formula feeds. I am extremely curious to see if he gains weight eating. I've been packing his food full of calories where I can. Let me share with you what Liam ate yesterday:

(Pic from Saturdays breakfast because I could find Sundays breakfast pic. Sat breakfast was home style hashbrowns eggs and biscuits and gravy)

Sundays breakfast was eggs, sausage, pancakes and syrup. 

When I make his scrambles eggs I add lots of butter. Same for the potatoes. It adds extra calories where I need it to be added and I noticed he eats more when I use lots of butter. 

For snack he ate an entire package of fruit snacks. That's 80 calories in that one sitting. I discovered strapping him I to the high chair he was more. 

Before dinner he wanted apple suace. He ate all this apple suace and a few peices of cereal. 

For dinner we went to Casa Grande. Liam ate lots of chips. I know I gave him 5 and I'm sure his uncle, aunt, grandma, papa, and cousins gave him more. He also ate a French fry, the cheese off 4 tacos (everyone is always more than willing to share their food with him knowing he needs to eat), some taco meat and a few bites of beans. He also tried cutting his meat and cheese. It was the first time he held a knife and I was shocked he knew what to do with it. 

After dinner we had desert at basken Robbins. I shared my ice cream with him. It was called tax crunch and had lots of chocolate in it. He ate 15 half spoon fulls. Every time he asked for more I was more than willing to oblige. 

As you can see yesterday Liam ate ALOT.  I am so proud of him and am praying and hoping that he has gained weight eating and that maybe we can start discussing what to do next with his GI. I know it's always 1 step forward and 2 steps back but still just watching Liam eat brings me joy. 

Inner battle

I've been ragging an internal battle since wensday when I took Liam to his GI. At first the wanted me to completly cut him off of eating and drinking orally but after my protest they said I needed to atleast severely restrict what I have him. They're doing this because every one of his doctors and specialist thinks he's aspirating while eating. He did just get out of the hospital for aspiration pnuemonia so that didn't help our case. I told them that I would not restrict him but I would not offer him food or cuppies but if he wanted it I would give it to him. I've cought myself offering him food and cups all weekend. I can't help it. We've waiting 2 years for him to eat by mouth. I've spend the last 1 year and 9 months fighting with the feeding pump. Many many times in tears because the pump refused to work and Liam's intestines fought against it. I even broken down once and looked Liam in the eyes and asked him why he refused to eat. The feeding pump has been my worst enemy since he's gotten it. I've spend countless nights up all night trying to get it to work. I think of how Liam's pretty much slept through night for the last year and a half (not counting waking up for nightmares) and how much sleep I've lost out on during that time because I had to continue to get up to feed the pump. I can with all honesty and sincerity that I am Truely exhausted. It took 2 years but I am exhausted. I get frustrated. I've worked so hard getting him to eat by mouth the last year and 9 months and now he's finnaly eating small amounts and they want me to stop. Since wensday Liam has thrown atleast 5 fits a day for food. He's cries and screams until he gets what he's asking for. Even tries to get it off the counter himself. How am I supposed to deny a baby who is desperate and begging for food? I can't. We'd give him about 5 minutes before we would cave an give it to him. Today being day 4 we don't even deny for that long. Logically, how is he ever going to learn to swollow properly if he doesn't keep at it? He's not! The doctors at children's did this to us once before when Liam was just starting to eat. He was 6 months old and they're way to his heavy breathing and possible aspiration was to just stop feeding him. When Liam was 8 months he was flown back to UCSF where they were apauld to find out that Childrens hospitals solution was to stop feeding him. They restarted him on oral feeds. He's supposed to have a swollow study done on Monday. I am praying hard that he isn't aspirating but from what his lungs sound like after eating sometimes I think he is. I'm also praying that there's another solution besides to stop feeding him. If he's aspirating from his stomach up instead of mouth down then his surgeon will be called in again to reevaluate redoing his Nissen. We know for a fact that he is aspirating from the stomach up we just don't known if he is from the mouth down. In aggravated at the entire situation. I hate watching Liam go through all this. I am also amazed that he continues to be happy and have a great temperament despite everything. With Gods grace he will continue to be this way and just take life in stride.