We want to try the Graz method, which was successful for many people and I know a few of them, overall almost 90% success rate. To get more info on this click here . Basically you must introduce hunger to babies and kids so that they associate their satisfaction with eating orally and not through the tube. They must present hunger cues and that is when you feed them, not around the clock through the tube. Jasiu pulled out his NG on Sunday so we thought, lets try to see how much he will take and how it goes... Let's just say he is either not hungry at all or just happier hungry than full. He would take half an ounce to an ounce and then be completely satisfied. The most he took at once was 2 ounces and once he burped that was the end of it. So we played the game of feed the baby every two hours or so for 2 days. I did not mind because he was taking at least some but he could sleep for 5 hours on that 2 ounces and that scared me mostly because he needs ood nutrition to grow and recover from surgery. I was armed with a baby scale to track his weight and a food scale to keep track of how much he peed so that we know how much fluid he still has in him to prevent dehydration. It didn't go horrible but not well either. When hungry he will show all signs of hunger and I would feed him, burp and then feeding was over... tried placing the bottle in his mouth again and it was like placing hot coal in his mouth. He turned his head away, flipped his arms out at me and if I kept offering the bottle over and over he would cry from aggravation. He did and still does his best eating in his sleep. He will sometimes take over 2 ounces until he notices that he's eating and wakes up.. then it's over and won't take another sip. I am pretty sure the cause of this is reflux partly caused by the NG so we will be starting Zantec in addition to the Prevacid that he is already on. Hopefully it helps. So on Wednesday morning after 12 hours of no wet diapers and no improvement in intake, I placed the NG back in. Sad day... but Jasiu is just not ready yet and I realized that is OK. I stumbled upon another blog of a mommy with a baby with "EB" and it broke my heart to see how much her little guy had to suffer and seeing other little kiddos unfortunately not doing well always grounds me because I have SO MUCH TO BE THANKFUL FOR. That little NG is awful, but it is still helping Jasiu so we will stick with it until he can eat on his own. After speaking with the cardiologist today we will develop a plan to wean off of it once everything else is under control. I was almost ready to put my foot down at the cardiology office if they were not going to address the tube issue with us but they braught it up this time and I'm happy that they are aware it's an issue.
Besides when we try to feed him Jasiu is quite a happy camper. He smiles constantly, coos, babbles and loves his fingers (I wish he got calories from them instead of making himself gag.. he would be one fatty). He loves to twist around on our bed and in his play pen and is about an inch away from flipping onto his belly. Jasiu already is on his sides and even has his head off of the matres and just needs just a little bit more strength to do it. I think if he didn't have his Glenn he would have been rolling back and forth already. The cardiologist was impressed that he's that active just 4 weeks post Glenn. Jasiu also figured out he has feet and hands... he can look at them for quite some time and when we put red socks on his feet, he's even more amazed. He also likes his toys now and reaches for things and even sits supported, in fact that seems to be his favorite activity sitting and watching TV. My little couch potato :)
Today was his post op cardio visit and we had an echo as I expected. 5 months into this journey and I still get so nervous before these things.My sister, who joined me at the appointment today (hopefully jokingly) thinks I should be medicated for anxiety. It is so nerve racking especially because I learned to read the techs doing the echo, who by the way can not comment on anything they see, that is the doctor's job. Quite a few times I saw him shake his head and make a sort of worried look on his face as if he wasn't expecting to see something he saw. So I was sitting on pins and needles this entire time. He was able to get GREAT pictures because Jasiu, if there was an award for the best baby during an echo, would have gotten the trophy. He was quite tired already and fell asleep on the table watching cartoons (back to the couch potato comment) holding my hands and me shhhhishing him. He was just perfect for the echo though I don't want to jinx it for when he's older.
So we waited for the doctor to read the echo and then we spoke about the results... Basically there are two leaky valves and the high blood pressure reading from the cuff was also confirmed with the echo. We are hoping the high BP is just transient while Jasiu heals from the Glenn and it will pass, in the meantime we will be on Enalapril just to be safe. In addition they want blood work to make sure kidney function is good and we did that right after the cardio visit at the hospital. We can lower the dose of the Lasix and as stated before we will add Zantec for reflux. All my questions were answered, however the weaning plan must wait until the bp is under control and we are off of the Lasix. We go back in one week to check the bp. In addition Jasiu has mild arrhythmia, his little heart skips a heartbeat here and hhere but Dr. H wasn't too concerned just yet. It's just another thing they have to keep an eye out on.
Right after the cardio we went to the lab to get the blood work done. I was happy about the fact that it only took one prick to get the blood . Jasiu took it like a champ and as soon as I picked him up he stopped crying. However, as I was writing this entry, I got a call from the hospital that the sample they took is no good because apparently it started to clump and we have to go back for another blood draw. I am NOT a happy camper...I am going today so that Jasiu has a relaxing day tomorrow and not get pricked tomorrow as well.
We are also clear to start taking him places outside the home, but to be aware of our surroundings to make sure he doesn't get sick. If Jasiu is not crabby tomorrow from today's blood work we will go to a birthday party tomorrow if not mommy and Jasiu are taying home.
Please pray that his blood pressure stabilizes at a lower more acceptable range and that he can get nice and strong so he can starting eating on his own.
Here are a few pictures of my tubeless little munchkin: :)
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| In his own Room |
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| Daily weigh in ! |
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