Forever and a day...
          That's what it feels like, forever and a day since I've updated the blog. :) At first I was just so frustrated and had not a whole lot different to say. Then, as of last Monday things have been so GREAT we have been so busy just enjoying our time and him feeling better that I haven't had time to update the blog. Excuses, excuses. :)
          We did end up going back to the 22kcal formula and 85mls per feeding and it took a good week  for Bricen to start to feel better. We started the Prevacid and after figuring out that we need to warm it a bit before putting it directly in his belly via the G tube, it has been wonderful. I told the Dr. today that Prevacid has changed our lives. lol I know God is right there with that Prevacid. :) I don't want to short him of the glory. I was literally praying that something had to give for Bricen's sake (and Mommy and Daddy's sanity). I am so thankful. I'm still kind of holding my breathe though. I know I have to have faith. I know even when we were at the end of our rope God was taking care of us.
          As for Bricen's weight gain he had actually lost a few ounces during his ordeal with the increased calorie formula and not tolerating it. I am happy to say we are headed in the right direction on the scale now! And as of today he has no longer "fallen off" the growth chart, he is in the 5th percentile. Yay! He is tolerating the increase in volume now that we are off the higher calorie so I assume we might see some chunk on this baby soon!
          He has started to teeth. So he is a tad bit (and sometimes more than a tad bit) fussy. It's nothing we can't handle after everything we've already been through. It's nice to know he's just fussy because of teething and not be wondering or worrying that it's because of something medical.
          I want to take a few to recognize my husband. He does not like hospitals. He never has. He also, before Bricen's special needs, has had no medical background or experience. Marty  has done a great job stepping up and simply being a dad to his son and helping to meet his needs in whatever way they need met. This means from the usual changing of dirty diapers most dads don't like to do to the holding Bricen while I insert the NG or learning about a G-tube and how to use the "Emergency Kit" if it happens to come out. We've each have our moments of weakness and frustration. But it always works out that when one of us is having a hard time, the other is positive about the situation and able to pull the other through. I am very proud of him and thankful God put him in my life. Enough sappy stuff already!
          You know those parents that think eeevvverrrythiiing their kid does is the cutest thing in the entire world?? Yup. That's me. Here are a few of those things he's doing now that I don't want to forget. Bricen has found his feet! He makes me laugh daily. I just love his expressions and animation. I love that when I sing to him now he stares at my lips and will reach up and touch my mouth. Last week, I had his pacifier in my mouth while I was getting situated on the couch. He reached up, took the pacifier out of my mouth and put it in his. His facial expression was like shocked that I had it instead of him. (Just for the record, the outside of the pacifier was in my mouth, I find it gross to do otherwise.) He is trying to roll over. I think if we could put him on his belly (can't, still too sore from G tube) he could get to his back but trying to go from your back to belly is harder. He does get very frustrated when he can't get on over. It's quite comical. (We say he gets that disposition from Dad.)
          He has taken an interest or simply noticed the dogs in the last week or so. His eyes follow them around the room and reaches for them as they walk by. Akita still just wants to lick him to death and Scruffy just wants to sit as close to him as possible. We went to Sam's club, our first big outing. I prayed he stayed "healthy" afterwards or I would feel like crud for taking him out. But, we have to start building up that immune system while protecting him at the same time. He did great at Sam's club. And I felt like we were walking on clouds just because we got out and about. He hammed it up for the ladies at the service desk. He's pretty good at doing this at the right times. I say he's already a flirt.
          Daddy thinks Bricen has a favorite cartoon. I am thinking he must have just been in a good mood when that one happen to come on. Oh, and we've started  baby food with the dropper. We've done baby food about four times and he seems to be liking it more and more. Peaches and bananas seem to be a hit. I love love love when Bricen does his baby babble. And I love to watch him and Daddy play. I have to admit it, I think Marty will be the first one to get a good giggle out of Bricen. He loves to play with his Daddy and holds his hands up over and over for Marty to act like he's eating them.
As usual, we have lots of pictures. I just can't help it!!!

I could have handed him the most expensive toy I could find and he would have rathered had his feet.

 Mmmm, peaches. Our first attempt with baby food.

 Sometimes playing can tucker a guy out.

Bricen gets his pictures taken April 5th and we can't wait! We were playing with the bow tie and trying some outfits on and he fell asleep on the job.

Looking less and less like a bobble head everyday!

Ummm...is my son's peach fuzz making a rat tail?? 

I thought for sure he could wear these sandals now. Apparently, my judgment is way off. One on the right is Akita trying to do a combat crawl under Bricen's bassinet to get in the bathroom. She is a nut and a half!

Sheww...hopefully I can be better at keeping things caught up now. :)

          Today was pretty miserable for Bricen. It wasn't fun for me either. Poor kid stooled all day long. His bottom is broke out. And he was also spitting up/puking over and over from the same feed. My plan is to call Riley tomorrow and tell them what my game plan is. We are going back to what he was on before surgery, 85ml every three hours on the 22kcal formula. Once his belly settles we can add one change at a time. We changed so many things after surgery there is no way to tell what is causing the problem. I know this might look bad. My kid has fallen off the growth chart and is considered malnourished but I promise you he is not going to gain weight by increasing calories and volume and making him spit up more and diarrhea more. That's the bottom line. Not to mention his belly is so upset he is not tolerating anything in his mouth. I feel like we are taking steps backwards in that department as well. And most importantly, it's impossible to trouble shoot when you make so many big changes all at the same time. Some of this trouble could simply  be the G tube.
          There is such an emotional roller coaster involved with parenting but I think this is intensified when you are parenting a child with medical needs. I dread making that phone call in the morning. At the same time I'm so frustrated and tired of watching Bricen go through this that it doesn't matter. There is the possibility of teething but I'm doubtful if that's the problem. If he was fussy because of teething he should feel a little better after giving Tylenol and I see no difference. Time will tell. I've said it before and I'll say it again. I'm just frustrated. And while I appreciate the expertise of the doctors and the input of other people, I'm tired of feeling pressured by other people to change Bricen's diet when Marty and I know this kid better than anyone else. When it comes down to it we are the parents. I'm hopeful that we can increase calories or volume once we get his belly settled and I know how important it is to try.
          We have a lot of pictures to catch up on....

 Mom was experimenting with the stroller again. Poor kid would really do well with a stroller made to snap in an infant seat but we don't have an infant seat. We have the car seat that Riley suggested that's best for kids with airway obstructions and it's a convertible one that doesn't snap in a stroller.

 He has actually come a long way and is improving on head control. He should be ready for walks soon.

 10lbs 4oz at the Dr getting the last synagis injection!

Yes, I turned the big 30! Man, I'm old. This was the super cute cake Bricen and Aunt Bri put together for me.

No one wanted to eat Bricen. Haha.

 This was another Dr. visit. Our only one for the week. Yay! He looks like such a little man in this picture.

 Time to come up with plan B because Bricen is pulling the blankets under his head on top of his head now. :)

Hey, handsome!

It was beautiful weather but Bricen just didn't feel like enjoying it. We stepped out on the porch and then had to run back inside because he started to gag. I have to say, he sure does know how to rock some shades!

This is his new bed. It's a pack and play but a smaller version that can fit to move from room to room. Bricen does has a beautiful furniture set in his room. (Thank you, Grandma Juanita.)  Maybe by the time he's in Kindergarten his mom will feel comfortable letting him sleep in his own room. :0)

Catch up...
          Last week was a whirlwind of a week. I had to be at work Monday and Tuesday at 8am for orientation type stuff for our move to South campus. Even though I only had to be there a few hours each day it sure did mess up our week. Then Wed and Thursday we had Dr. appointments and Friday O.T. came for a visit. Then it was Saturday and Sunday and time for work again. Those moms that work five days a week are going to hate me for saying this but some weeks my five days off flies by! Nonetheless, we made it.
          We are still having problems with tolerating feeds. :( We had gotten up to 90mls with each feed by Friday but Saturday was a horrible day for Bricen and Marty so we went back down a little to 87mls. Bricen was just miserable during after and before feeds. We saw Speech Therapy Thursday of last week. I shared my frustration with eating and with the aggressive schedule the inpatient dietitian had us on. Bricen had started gagging the first dropper I would put in his mouth when trying oral feeds. She said maybe he is just too full from the increase on calorie and volume. I confirmed with her that the nectar thick with the dropper did not show aspiration on the swallow study. It made me feel better just to recheck and make sure I wasn't putting food in this little guys lungs. So for now our oral feedings are on hold. Speech shared my concerns with the Development Pediatrician and she called me Monday.
          Basically we agreed that Bricen is a tough one to figure out. We are switching from Prilosec to Prevacid. She mentioned the idea of going up to 30kcal formula. (sigh...and I actually just signed after I typed that.) I am going to drag my feet on that idea for as long as I can. Give his belly time to adjust. I shared with her that we had a surgery on his belly and then increased kcal and volume aggressively and I just didn't feel it was a good idea to try the 30kcal right now. Not to mention if I remember right while in NICU they shared that as the calorie content goes up the stomach is slower to move things out so the GERD can actually get worse. But also it makes him have loose stools. We've already seen an increase with the 27kcal and fighting diaper rashes daily. So in the end she didn't push for it. Already with the increase to 27kcal he makes this face during feeds like you just put something horrible tasting in his mouth.
          We saw the regular Pediatrician today and as silly as it sounds I was somewhat hoping Bricen had an ear infection since he had been messing with his ear and this would cause increase in vomiting etc. His ears looked good. I know, who would hope their kid has an ear infection? I hung up with Developmental Peds with the plan that (assuming no ear infection to blame things on) she would talk to Speech Therapy about trying cereal again and we need to see a GI Dr. at Riley to make sure we aren't missing anything. We've tried erythromycin to increase motility and he didn't tolerate that. They don't like to put little ones on Reglan because it can cause neuro problems. I don't like the idea of going to GI because they will probably want to put him thru testing to figure stuff out but I think it's a good idea to make sure we aren't missing anything. Dietary is going to be calling to touch base and come up with a new game plan too. I'm going to work on my attitude between now and then. :) :)  I am reminding myself that there are lots worse problems we could be dealing with.

We've started using the boppy to nap on. He still looks so small sleeping in it. I love to watch him sleep so had to capture a few moments. 



          We were able to put away all the NG supplies which included putting this halo and all the other ones away. The only time we used them was to keep Bricen's hands down when putting in the NG. There was always one laying out on his changing table ready for use. I'm glad that now his room will be known as a happy place and not always the place we go to change the NG.

 Wondering what he is looking at? The t.v. on the other side of the room. He is a couch potato already!

 I'm glad his sleep studies are improving because it's pretty much near impossible to keep him on his side. This is usually how we find him but it's usually with his legs up on the end of the bassinet. He is going to outgrow this thing before we know it!

 My little thumb sucker.

 I think not having the tube running down his throat helped his progress with eating. He seemed to be working his tongue and mouth a lot better.

 Learning to master the art of holding your own pacifier.

 Love this face!

I think I've figured it out. I think he pulls things to him trying to scratch his nose and this is what I come back in the room to find. Such a silly boy.  

 Brilynn has been sick. This was my poor excuse for a "Get Well" cake. :)

This was on two separate days. Akita and Scruffy waiting on Marty to get home from work. :)

Happy Friday! 

Surgery Day...
          Guess who overslept the day of surgery?? Yep, you guessed it. We were suppose to leave at 6 am and instead we woke up at 6 am. We somehow made it on  time or just a few minutes after seven but it did make for a hectic morning.
           I thought Bricen would be pretty unhappy before surgery because of not eating for so long but he did pretty well. He was a trooper while getting his vitals taken. In reality his gown had horses on it but we called it camo.

          I think recovery was the roughest part for me and Marty (and Bricen). He was just not comfortable. They ended up asking the Doc for more pain medicine and it seemed to help. The anesthesiologist came out and says in a nutshell that I was right Bricen is a difficult intubation. He also said he could see how a smaller community hospital like the one he was born at would have a hard time with intubating him because he just isn't made like everyone else. Pretty much he said if it was a specialty children's hospital it shouldn't be a problem but be cautious with any other hospital. My thoughts on this were #1 Um, yea I told you he was. Did you not believe me? #2. I don't plan on letting him be intubated anywhere but Riley. 



For the longest time after we got to Bricen's room I held him. My arm and my bottom was numb but I wasn't about to move and make him hurt again.

 Finally, after another dose of morphine up on the unit, Bricen got some rest.

 And so did Daddy. Marty took the night shift Sunday night so I could get some rest since I'd be staying with Bricen at the hospital Monday night. He was pretty exhausted himself. This is our typical sleep schedule. Monday thru Thursday when Marty gets home from work we do dinner and then I take a nap so that I can get back up and stay awake for this high maintenance baby during the night. Any naps I catch during the night are bonus. Friday and Saturday nights we do dinner and Marty takes a nap until I wake him up so I can sleep during the night and go to work the next day. By Sunday nights we are both pretty tired. Sometimes I get a nap before Marty goes to bed and sometimes Marty is ready for bed by the time I get home. It's a team effort. Bricen has started sleeping for longer periods though, so I expect this to get better. The joys of parenting. Wouldn't trade it for the world!

I was trying to capture the eyes. This was after the morphine. Little guy was definitely going down "morphine drive" and you could tell it by his eyes. Thank goodness he was fine with just Tylenol after that one dose in recovery and then one dose up on the unit.

He worked and worked on getting this off his arm. And at one point when we woke up for a feeding during the night he had succeeded. Thank goodness he didn't actually get the IV out though.

          Tuesday morning the whole team of 900 (exaggeration) comes in. This, of course is after a few people come in one at a time and I answer the same questions 900 times. Anyways, the "Calvary" (my new name for them) come in and is asking what Bricen's feeding schedule is at home (900th time). I tell them 85ml every 3 hrs. Dietitian comes back in later and tells me that Bricen has fallen off the growth chart. He is considered malnourished and that he should really  be taking in more than the 85ml. She also says he's not just mildly malnourished but moderately. His wt has fallen off the chart but his head circumference and height is where it should be. (Have you seen his dad?) I was of course upset about this. Other than being small how was I to know? I was doing what they told me to do at the last Development Peds appointment. They said 80ml with each feeding (what he was on at that time) was a lot for him and we didn't need to worry about increasing for awhile. We were suppose to try to move up to 24kcal formula but if we weren't able to that was okay because (again)80ml was a lot for him. (Typical formula is 20kcal.) A few weeks ago he was acting hungry before time for the next feed so I went up to 85 myself. I was doing what they told me and then made the decision myself to increase. I realize he is smaller than other babies but he is a preemie.
          So we had been doing 40ml feedings all night (because of surgery) and then these fools tell me we are going to go from the 40ml feeding to 100ml with the next feeding to get him up to where he needs to be. hmm...No, no we aren't. So they decided we do a couple 85ml feedings then jump to 100ml. mmk. Of course at 80ml he pukes. Then they decide we will increase to 27kcal formula and stick with 80-85ml. Fine. I'm still not happy because his belly has been thru a surgery and now we are switching. Last time he was on that high calorie formula was right when released from NICU and his GERD was horrible and the projectile vomit was horrible. So I am a little gun shy so to say. That's what we came home on. So far his puking hasn't been bad but you can tell it bothers his tummy because with most of the feeds he gets fussy and upset.
          I understand the importance of growing. But malnourished?? He was stooling and urinating appropriately. He was happy. Every doctor we went to would say "Is he gaining weight?" And I'd say yes and we would move on to the next subject. Literally, that was the conversation at each Dr. visit, speech Therapy visit, etc. How was I to know? The nurses were great. Night shift and day shift made a point to tell Marty and I we were doing a great job with Bricen and not to get too hung up on the "malnourished" label. It was nice to hear and boy did I ever need to hear it! So now we have to get out (along with our other Dr visits) and have a weight check once a week at a germ infested Dr office. They want him to gain an ounce a day. Time will tell. I'm just frustrated because I've done what they say. We are good parents doing the best we can and Bricen's health is my number one priority and then to get told your son is malnourished?? And now to see him get upset with each feed...just frustrated.
          Other than all that mess the surgery went well and we are thankful for that and the prayers.