Can you believe it?

It has been a whole year since I wrote this. I can't believe how fast the year has gone by, it is so amazing how much Evan has grown. When we were at my inlaw's house all the boy cousins would take baths together. Evan was actually chunkier looking than his cousin. He has gone from below the 5th percentile in weight to average. It was a hard road but I am so glad that the journey is done.

BeforeAfter

Free from the tube

On Thursday morning I encountered a situation eerily similar to this. This time I saw the tube laying innocently on the floor. I made a half hearted attempt to replace it but had pretty much decided that it had been out all night. Evan's GI doctor thought that we should just not worry about it since we are not using it any way. If we need to have it replaced then it can be done fairly easily, all the tricky work had already been don with the initial placement of the tube.

It sure is nice not having to worry about it any more. It feels strange to hug him or play rough with him and not have to worry about it tugging. Evan's shirts do not poke out in a strange spot any more. We can get him one piece footie PJs this winter and not have to worry about adapting it so that we can take care of his tube. Our night time routine is changed and we can finally think about dropping that last bottle which was used as a bribe to keep him still while we cleaned the area around his tube. Of course now he is not a cool boy with his tummy pierced, but I think that he will not be loosing face with his nursery friends, he has plenty of scars to compensate.

It is finished

Today we had a short but good visit with the GI doctor today. After talking over the issues with her we decided to stop all tube feeds. If he looses weight it will be obvious proof that he still needs the extra nutrition so the insurance company will not be able to say boo to us. Neither of us think that he will loose weight though. Evan has transitioned nicely from tube feeding to oral eating.

It is going to be so strange not hooking him up to the feeding pump tomorrow morning. He will miss his daily dose of Baby Einstein. I will now have to figure out what to fix him for breakfast every morning. My morning blog time will be cut short because he will not be stuck at the table for an hour every morning.

The best feeding transition was when we stopped night feeds. No more having to wake up in the middle of the night to shut off the incessant beeping of the pump. No more hearing beeping on a medical show and running upstairs thinking that the feeding pump was going off. You would be amazed at how often you hear beeping when there is none. We also said good by to 20 pound diapers in the morning with that transition.

All in all it is going to be nice to be free from the feeding pump. It has been our companion for two and a half years but it is time for it to go.

Who died and made you king?

I have been feeling very grumpy of late and I am finally ready to get it out of my system. Friday I found out that my insurance company has decided to no longer pay for any of Evan's feeding supplies. They think that due to the fact that he is only on one can a day of Pedisure that they should not have to pay for any of it now because it is obviously a supplement and not a major source of nutrition. Grrr!

Why is it that they get to decide when my son has been on the feeding tube long enough? The reality is that it should be his GI doctor and me that make the final decision, not some pencil pusher in an office that has never even met Evan. If they had met him they would be so charmed by his cuteness that they would give him anything that he wanted.

Luckily we already have an appointment with his GI doctor scheduled in a little over a week. I had anticipated that we would be stopping all tube feedings at that time so I am not fighting the insurance company right now. We have enough extra supplies to eek our way through the week. If the decision is to not stop the feeds then all hell will break loose.

I have to say in the insurance company's defense they are generally pretty good about paying for things. Many of the people that I know that have kids with feeding issues can't get any type of formula for their kids covered because it is considered food. I am rolling my eyes right now. I do take issue with the fact that my insurance company will not cover the cost of us seeing a nutritionist. You would think that they would cover that kind of thing for a kid with a tube but they don't. They don't cover the cost of any one seeing a nutritionist.

Follow up

It's a good thing

Since the introduction of the fork the other day I have noticed that Evan has been a lot more interested in trying the things that we have for dinner. Generally during the day he eats kid friendly fare like chicken nuggets but at dinner time we insist that he trys what we are eating. He has to take one bite of every thing and then if he won't eat any more then too bad. Generally he takes the bite and that is that. No trying of food on his own. Lately though he has been eating a ton of dinner. He may not use the fork for the whole meal but he has been eating a good amount. Yeah Evan!

Who would have thunk it?

Evan made an eating break through today. We had been allowing him to use a spoon with his meals for the last few weeks because he had shown actual interest in using it as a utensil rather than a fun toy. He had been doing ok with eating with a spoon, not super great and very messy. A couple of nights ago when we had spaghetti for dinner my husband mentioned that we should get him a fork to eat with.

I went to Target, got him an Elmo fork and spoon set (not my first choice but it was either that or Dora the Explorer) and this morning we let him try out the fork with a breakfast of french toast. He used it like a pro!!! I was very surprised that he knew how to use it so well. How the heck did he get to be such a big boy?? Where did my baby Evan disappear to? Who is this strange toddler Evan?

Feeding Your Child

Back in the days when I was pregnant and my head was filled with all the joys of my upcoming birth I never questioned that I would be able to blissfully feed my infant into the appropriate chubbiness that is expected of a baby. Babies eat, it was as simple as that in my hormonally clouded mind.

Then I gave birth to Evan. He had a rough start in life and was not actually given any food for the first four days of his life. An IV prevented dehydration but the doctor was wary of feeding him because of the possibility that there may not be sufficient blood flow to his bowels causing the food to possibly make bad things happen in an already uncertain situation. This simple decision added to reflux and a heart that had to work harder than a normal one (ever try eating food while exercising? It is hard) led to a baby that did not like to eat and didn't really ever feel hungry.

It was devastating for me. I didn't see the heart defect so it really was easy to pretend that he was a normal child but the eating issues smacked me in the face every few hours. I felt like a horrible mother because my son would not eat the way that a normal child would. I had to cram a NG tube down his throat every night to make up for the nutrition that he would not eat during the day. I would not give him tube feeds during the day because that meant that he would have had the tube in at times when other people could see him and wonder why he was different. I wanted him to be normal and I went the extra mile to pretend that he was.

Feeding him in public always sent me into a tizzy. Evan had to have his bottles warm, so I not only had to deal with that but I also had to deal with him puking at the drop of a hat. It was very difficult to say the least and I often ended up having to go home from church to change my clothing.

Adding to my woes was an awful GI doctor that was no help at all. He seemed to barely speak English, I wondered if he even understood what I was trying to tell him. He ran a grand total of one test (an emptying scan to see if Evan was digesting food properly) and then told me that Evan's pacemaker placement was causing the problem because it was right over his stomach. He had me come all the way down to the city several times for weight checks, never even considering what a hardship it was for us. Each visit was a huge interruption to Evan's feeding schedule.

I kept desperately looking for the magical cure to the problem. I latched on to the pacemaker theory only to have that squashed soundly when it was later moved to the other side and his eating had not improved one bit. Many well meaning people even suggested cutting out the night feeds, thinking that getting food all night was hampering his ability to feel hunger during the day. I had tried that many times only to have to endure a cranky baby that ate even less than before. Every time I read about a parent trying a new thing to get their child to eat I was filled with hope and giddy to try it myself. Each time I had my hopes dashed.

After Evan had his stroke I took it on myself to stop all of his GI medications. I just wanted to see how much they were helping. Once I stopped them he suddenly stopped throwing up as much. After his first birthday he started throwing up during his night feeds and that was a signal to me that it was time to stop fighting the g-tube. Shortly before the surgery I also consulted with a dietician (which I had to pay out of pocket for since my insurance did not cover it) and got a lot of ideas on things to feed Evan. I also had an appointment with the GI nurse practicioner and she gave me the practical advice that I had been looking for from the GI doctor.

Letting Evan choose how much to eat, giving him calorie dense foods and stretching a stomach that had been previously used to only small amounts of food has really paid off. Things have gotten so much better and it is looking like this horrible journey is almost over. I certainly do not ever take it for granted when I watch Harry suck down a bottle or eagerly look for the next bite of his baby mush. I soak up the comments on how big Evan has gotten and how good he looks. I will also never ever give unasked for advice about feeding a child because they can be quite hurtful even if they are not designed to be. A listening ear is what I offer.

Somebody take me to the loony bin!!

After an afternoon of caring for a cranky baby I pull up Evan's shirt to blow on his belly. What does my little eye spy? A belly that is free of a g-tube, all that is remaining is the hole where it should be. Horrified I hand him to my husband and rush upstairs to get the replacement tube out all the while trying to figure out when it came out. As I try and jam the tube in I realize that my worst fears are confirmed. The hole was closed! [insert your favorite swear word here]!!!!!!!! The only way to get the tube in again is to have another surgery. That means a week of the injected blood thinner (instead of the oral one he is currently on) and three days in the hospital along with several follow up visits with various people. In other words a huge hassle. An enormous hassle in a year of enormous hassles.

I am going to call his GI doctor tomorrow and pray that she will say that we should give him time without the tube so we can see if he looses weight or not. He is already doing pretty good with eating orally so he could pull this off (fingers and toes crossed). I just had not envisioned the tube coming out permanently this way. I had thought that my safety net would be there for at least a year after he stopped using it. It would be there just in case.

I am feeling a bit paranoid since pretty much for his whole life he has been tube fed. I never had to worry about making him balanced meals because I had the tube feeds as a kind of back up. Now I have to try and trick him into eating his veggies and all that fun stuff that parents of normal toddlers have to worry about.

We did eventually find the missing tube. It was nestled under Evan's blanket in his crib. It had to have come out at nap time since I had used it for his morning bolus. Every other time it has been pulled one of Evan's caretakers has been to blame and the extension tubing has been hooked up to the button. A long tube with things that will catch is asking for disaster so we try and not have the extension tubing in more than necessary. It was not in for this nap so there is a mystery here that may never be solved.

Obsession

I am a woman that is obsessed with eating. Having given birth to a child that has medical issues which include eating issues I have become very conscious of how much he eats and when. This obsession spilling over to my perfectly healthy baby. He is not growing as fast as the pediatrician thinks he should be so now I am starting to obsess over his eating too.

I have a private theory that my kids are just slow growers like my husband and I were as kids. Of course neither of us were giant at birth but who says that giant babies have to grow into giant toddlers?

My husband's current obsession is this smell that he says is in our fridge. I think it is funny that a man that claims to have no sense of smell and will not smell poopy diapers even if the child is sitting on his face is being so bothered by an odor. I really can't smell anything outside of normal fridge smells. This has caused him to clean the fridge out so there is a big upside to this obsession. We now do not have any funky food in the fridge and it is sparkling clean with new boxes of baking soda in it.

Evan's current obsession is with his leap pad alphabet ball. It plays songs and will say the sounds of letters along with saying the name of the letter depending on the mode it is set with. He loves pushing buttons and the fact that it lights up when playing a song it an added bonus. He laughs hysterically when he hears some of the letter sounds, X especially cracks him up.

Harry is obsessed with his stomach and making sure it is full which is why I am trying not to worry too much about his eating. The kid is like a clock, wanting food every two hours. His appetite is a bit off because he does have a stuffy nose but if I suck it out he will breath much better and suck down a four ounce bottle in no time flat. Pretty good for a one month old.

Contradictions

I am very much a person that is pro breastfeeding yet my son is formula fed. I know all the wonderful and magical things that come when you nurse your child and yet I mix bottles of formula for my son.

Nursing for us was pretty much a doomed prospect. When Harry was hours old the nurses were giving him formula because his blood sugar was low (Ha! So much for their assumption that because he was a giant child at birth that I must have had gestational diabetes). He was also tongue tied and having rapid breathing issues (which sent him to the NICU) so nursing was really hard.

Once he got clipped and got rid of the excess fluid in his lungs which was causing the rapid breathing he was very much into the instant gratification of the bottle. I could have pumped for him. I could have even tried using a nipple shield but I just did not have it in me. I pumped for 14 months for Evan but then he was my only child and more medically frail than Harry in the first place so it was more imperative that I get him the breastmilk.

After dealing with a child that has eating issues where every feeding was a struggle I was quite frankly happy that he was eating. If I was a better mother I may have decided to fight harder to keep the nursing going but the reality is that Harry is my second child. I have to feed Evan and him every two hours and adding pumping into the mix would have just meant that I would never be able to leave the house. I was going nuts doing it and I had my mother and husband at home to help with the kids. I felt like that all I was doing was feeding and pumping.

Selfishly I also wanted my body back. I have been pregnant and nursing for over two years. That takes a lot out of a person especially when you have large babies and also have to deal with the health issues of one of the kids. It is so nice that I can leave the house and not have to rush back to be in time for the next feeding. I can go to a girl's night out and not have to bring the baby.

So while I know all the wonders of breast milk I am not crying over not nursing (well not too hard any way). I know that my Harry will survive this decision and that it is very likely that he will grow up to be just as bright as his elder brother.