Wednesday, January 11, 2012

Steps forward?

Owen had another GI appointment today. Although I was pretty nervous about this appointment, it went pretty well overall.

The points we went over:
1. Owen's weight: This is always the scariest part of Owen's appointments. A mom might say, what's so scary about a weight check? It's a normal doctor appointment routine right? Yes and no. It is something that they do everytime we go to the ER, to the pediatricians office, GI office, pulminology office, surgeon's office, ect. However, each time they tell me to undress Owen and place him on a scale, I get a big lump in my throat. A part of me wants to cry. How stupid. I know it sounds pretty dramatic but that's exactly what goes through my head every time a scale is placed in front of Owen's walk through life. So, I undress him, hold my place him on the scale, and hold my breath. To the nurse it is just another baby, just another weight to chart. To us, it is a question of whether what we are doing with Owen's feeds/tpn mix is working. The scale reads . . . "11.92 kilos. yes! Yes! YES!!!!!! Are you kidding? Pure excitement runs through me! Last time he was 11.4 kilos . . . he gained! great news :)
A great way to start an appointment

2. Owen's poop: What a weird topic, right? Well, it is a huge topic up for discussion each and every GI appointment. What else would a gastroenterologist be interested in? hehe
Owen's poop has not been his "normal" ( I say "normal" because Owen's normal is nobody's normal. It is diarrhea that doesn't leave the diaper if we are lucky lol).  I have been a little worried because his poop seems to be burning his diaper area. He is even starting to bleed. I have used every different ointment we usually use when a yeast infection gets this bad but they don't seem to be working. The doctor told me that, because Owen got multiple antibiotics in a short amount of time the past month, it's not surprising that the burning has lasted this long. She told me to give it another few weeks and she gave us a prescription for a new cream to try. I am picking up the cream tomorrow and I sure hope it works. The poor little guy is being such a trooper dealing with his horrible rash.

3. Owen's TPN/Lipids: This is the part that was a little scary to hear (even though I know it can be fixed and hopefully will be soon). The doctor said that Owen's liver numbers were shown to be elivated last week in his labwork. This means that his liver is showing the effects TPN/Lipids can have on the liver. Owen has been blessed with a pretty good liver. Some kids can show elivated numbers within days of being on TPN/Lipids. Owen was on them for about 7months in the NICU and only started having elivated numbers in the last 2 months. He has been on TPN/Lipids for 7months now and is just starting to have elivated numbers. The doctor said that they were going to lower his Lipids to only 5 days a week because lipids are mostly what causes the elivated numbers. Hopefully this will prevent the numbers from continuing to climb.

4. Owen's g-tube feeds: Owen is currently taking a formula called neocate infant at 27calories per ounce. His feeding rate is 55mls per hour/ 24hours a day. For almost 2 years we have been trying to get him to 30 calories per ounce. It has taken us almost 2 years to go from 22 calories per ounce to 27 calories per ounce. We have to move him up slowely to make sure he can absorb all the nutrition he needs. Since being on TPN Owen has been able to move up with his feeding rate/calories quicker. I am so excited because the doctor has finally approved him to move on to neocate JUNIOR! at 30 calories per ounce! This is huge because we have heard great things about neocate junior. Some doctors say that babies do better on neocate junior because it has a prebiotic in it that promotes healthy bacteria growth.

5. Continuous Feeding: Owen has been continuously fed through a tube since he was 3 weeks old. We don't know any different. He wears his backpack all day every day and its haning right by his bed on an IV pole at night. It is what kept him alive and continues to keep him alive. Today we discussed the possibility of weaning continuous feeds! This is huge! In a month or two we might be able to have 2 hours off a day of tube feeding! He will be without his backpack for 2 whole hours each day. Now, to be honest, Owen has been off his feedings that long before. However, this will be every day! I am very excited! This step is exciting to me because of the road it leads to. If Owen can handle condensing his feeds to 22hours a day, soon it could be 21 hours, 20, 19, 18 . . . someday maybe even . . . dare I say it?  . . . Bollus feedings!!! ahhh, that would be wonderful! I know, I know, I'm getting ahead of myself. A mom can dream can't she? hehe - I love that I can pretend to look into the future :) this is why I don't like goals. They get my hopes up. Yes, hopes are good but they also can bring big let downs if you think about them too much. I will try to continue to look at each day and be thankful for where Owen is.

1 comment:

  1. Hoping and praying for continued steps forward! I saw your post today on FB... hope everything is OK!