Last Monday Eli had his mickey button put in. My mom went with me since Rafe had to work and it went smoothly. I admit I left the room when they did it, I don't stomach some things so well. My mom stayed in the room with him and he only cried for a few minutes. It was probably more of being held down then the tube being taken out of his stomach and a little balloon type thing being put in. A few minutes later he was calm and smiling again, what a trooper!
I am not sure if I like the button yet or would just prefer him having the tube. Bath time is easier but feeding time in the middle of the night is not. He has this approx 8 inch tube that connects to the button; with a 360 degree turn it locks in. Then I connect his long tube that connects to the feeding bag to it. He has made great improvements on his bottle feeding now. He has done 50ml a few times now, his feedings are 70ml in total. After the Glen (heart surgery #2) his bottle feeding should improve greatly!
Friday the 30th Eli is scheduled for his cardiac cath lab at 6:30am. I asked what the purpose of it was since he frequently has echo cardiograms done. Dr. Husayni said it is to accurately measure the pressures in his heart to find out when to schedule the next surgery. For some reason I am kinda scared for Friday, maybe its because I know he will be sedated or that they are physically going into his heart.
Eli is making such great improvements I couldn't be prouder. He is 9.5lbs and 21.5inches long now. He was 6lbs and 19 inches at birth. His neck control is a work in progress but I would say he is 80% there. He hates tummy time, I don't blame him I hate laying on my stomach too! A few days ago he even laughed for the first time, it was adorable! I will be sure to update after the cardiac cath lab.
Monday, September 26, 2011
Saturday, September 17, 2011
The calm before the storm
Thursday night was the first time we had Eli sleep in his crib. Since coming home August 1st he has slept next to me every single night. We spent a month in the living room and have finally made it upstairs to our bedroom. I know "co-sleeping" is scary to a lot of people and I was always against it, until I had Eli. To me it was more scary to have him in another room where I can't hear him or see him. It wasn't a risk I was willing to take until I got him on a nice sleep pattern and got used to his sleep behavior. Besides, who doesn't enjoy getting slapped in the head at 3am by a little baby hand?
Well Thursday night around 11pm I brought Eli up to his room and placed him in his crib to begin his 11pm feeding. (Please don't think he is awake until 11pm every night..) He was a little freaked out and whimpered for a little bit. If he would have gone into full screaming and crying, crib time would have been over promptly. Due to his cardiac problems and the shunt he currently has in his heart, we are not to let him cry for more than 5 minutes. It is too stressful on his heart and can cause a lot of damage, another reason he was sleeping next to me. Well after about 10 minutes of whimpering he fell asleep and I waited for his feeding to finish. His feedings last 35 minutes and then the food pump beeps loudly and I then flush his G-tube with water. After that I went to bed and tossed and turned for about an hour. I was nervous and trying to concentrate on if I could hear any noises in his room or not. Rafe had fallen asleep on the couch so I left him to snooze for awhile.
At 2 am Rafe came in the room carrying Eli and his food pump pole. I was worried that Eli had been crying and I slept right through it. Come to find out, Rafe had stopped in Eli's room on his way to ours and felt bad for the baby as he was sound asleep in his crib. I mentioned this to Rafe last night and the truth came out.
We both have been feeling the same thing but haven't talked about it, we are very worried for this next surgery. We are scared to see our little baby all hooked up to tubes and IV's and not being able to hold him when he wants to be held. We will be on restrictions as far as holding and tummy time goes and it's like starting back at square one as far as recovery. His chest will be cut open again and that scares the daylights out of me. We have seen such great improvements and I don't want anymore delays.
We have had a pretty normal life for the past month and a half and it's been great. When I say normal, it's normal for us. We have had plenty of people ask us how we do it and they couldn't imagine going through our daily routine for Eli. It's a part of our life and we are happy to do whatever it takes for him.
So I think at this point we may just keep him sleeping on the bed with us until after next surgery. We want to take full advantage of cuddle time and waking up next to our little man. Anything can happen and we don't want to miss out on this time.
Monday September 19th Eli has an early morning appointment to get his G-tube removed and a "mickey button" put in. If you can imagine, it will just be like a little port we plug this small feeding tube into and then remove it after each feeding (the tube not the port). The "ballon" on the bottom is what is actually inside his stomach.------>
He is also scheduled for cardiac cath lab on Sept 30th at 6:30 am. They have never really told me why this is necessary but I know they mentioned it as standard procedure when we signed the release for the Norwood procedure. Dr. Husayni said typically two weeks after cardiac cath lab, they schedule the next open heart surgery for. This surgery will be called the Glenn. We will get more into that soon!
Well Thursday night around 11pm I brought Eli up to his room and placed him in his crib to begin his 11pm feeding. (Please don't think he is awake until 11pm every night..) He was a little freaked out and whimpered for a little bit. If he would have gone into full screaming and crying, crib time would have been over promptly. Due to his cardiac problems and the shunt he currently has in his heart, we are not to let him cry for more than 5 minutes. It is too stressful on his heart and can cause a lot of damage, another reason he was sleeping next to me. Well after about 10 minutes of whimpering he fell asleep and I waited for his feeding to finish. His feedings last 35 minutes and then the food pump beeps loudly and I then flush his G-tube with water. After that I went to bed and tossed and turned for about an hour. I was nervous and trying to concentrate on if I could hear any noises in his room or not. Rafe had fallen asleep on the couch so I left him to snooze for awhile.
At 2 am Rafe came in the room carrying Eli and his food pump pole. I was worried that Eli had been crying and I slept right through it. Come to find out, Rafe had stopped in Eli's room on his way to ours and felt bad for the baby as he was sound asleep in his crib. I mentioned this to Rafe last night and the truth came out.
We both have been feeling the same thing but haven't talked about it, we are very worried for this next surgery. We are scared to see our little baby all hooked up to tubes and IV's and not being able to hold him when he wants to be held. We will be on restrictions as far as holding and tummy time goes and it's like starting back at square one as far as recovery. His chest will be cut open again and that scares the daylights out of me. We have seen such great improvements and I don't want anymore delays.
We have had a pretty normal life for the past month and a half and it's been great. When I say normal, it's normal for us. We have had plenty of people ask us how we do it and they couldn't imagine going through our daily routine for Eli. It's a part of our life and we are happy to do whatever it takes for him.
So I think at this point we may just keep him sleeping on the bed with us until after next surgery. We want to take full advantage of cuddle time and waking up next to our little man. Anything can happen and we don't want to miss out on this time.
Monday September 19th Eli has an early morning appointment to get his G-tube removed and a "mickey button" put in. If you can imagine, it will just be like a little port we plug this small feeding tube into and then remove it after each feeding (the tube not the port). The "ballon" on the bottom is what is actually inside his stomach.------>He is also scheduled for cardiac cath lab on Sept 30th at 6:30 am. They have never really told me why this is necessary but I know they mentioned it as standard procedure when we signed the release for the Norwood procedure. Dr. Husayni said typically two weeks after cardiac cath lab, they schedule the next open heart surgery for. This surgery will be called the Glenn. We will get more into that soon!
Subscribe to:
Posts (Atom)