Sunday, October 5, 2008

Encouraging!!

Before we left for dinner, we talked to a doctor about Benjamin's pacemaker and eating. Here are the highlights from the conversation:
  • He is having to use the pacemaker right now b/c he has a complete heart block. His heart is beating some on its own, but not enough.
  • They check the pacemaker throughout the day. It is currently set on 125 beats per minute. If, when they pause it (to check) his own heart rhythms are high enough, they will turn it on back-up mode. (Where it would automatically turn on and start working if his heart went below a certain number.)
  • If he goes a full 24 hours and does not need the pacemaker for backup, they will turn it off but leave the wires attached (to his stomach) and the pacemaker on his bed in case they need to turn it back on.
  • Going a full 24 hours without backup means two things: I could breastfeed him and we could be moved out of ICU. (I can't breastfeed him right now b/c the pacing wires are small and sensitive.) Honestly, I am not in a hurry to move out of the ICU at all. He gets more supervision there and I don't feel bad leaving at night to sleep (like I should be doing now) b/c there is one nurse for two patients. BUT the breastfeeding thing would be huge.
  • If he goes *another* 24 to 48 hours with the pacemaker off (but still attached) without needing it, they will most likely remove it altogether. (I'm not sure how long after that we would be able to go home.)
  • If, after seven days, he is still needing the pacemaker, we will discuss various options, including installing a permanent pacemaker in his chest. The reason it's probably needed right now is because of bruising and edema (swelling) from the surgery.
  • The doctor also said that if she would let us try a bottle once more and then we would have to insert a feeding tube. But he was so sleepy and after our second attempt, he just did not seem interested.

So we left kind of discouraged, thinking we'll be here for many more days and feeling like we're moving backwards with the feeding tube. So we ate a delicious dinner (did I mention we get dinner every night at the RMH??) and went back a few hours later. I fully expected to see a feeding tube. I did not. I asked the nurse and she said that she was going to discuss options with the doctors who came on rounds tonight.

Matthew and I played Rummy (I stomped him) while we waited. She came in a little while later and said that we were going to try the bottle once more.

So we did.....

And he took it like a champ!!!!!! I was so excited! He took almost a full ounce and so we warmed up another full ounce. He downed it without much coaxing needed. Then we propped him up to burp him, and he let out a gigantic belch! That's my boy.

So we're going to try to go the bottle route. I pray it works until he no longer needs the pacemaker and then I can breastfeed!!

Thanks for all your wonderful prayers and comments. I'll try to take some cute pictures tomorrow.

10 comments:

Lisa said...

Angela, you continue to amaze me. You are always so upbeat, even when I know you are mentally and physically exhausted. Your attitude through all this is inspiring and that little boy is so lucky to have you as a mother.

I am sending tons of positive thoughts Benjamin's way to make a full and quick recovery.

(((hugs))) Lisa (mom2jax) from Babyzone

Stephanie said...

Praise God! YAY!!!!!!!!!!!!!

Mary Jo said...

YAY for the little piggy! I was thrilled to come on and see the title "Encouraging"! Its hard to think about how long you might be at the hospital but this is such a one day at a time, one hour at a time kind of thing. Benjamin keeps proving that by surprsing you each time you come back to his room! Love and prayers - MJ

Erica said...

YEAH!!! I am so happy he took the bottle. That is great. Like MJ said I was so happy to see the words encouraging.Lots of prayers and hugs. Erica

Jill said...

YAY!!!! That is good that he took the bottle. I am still praying for him, you and Matthew. Make sure you and Matthew are also getting rest and support.

Jill

Christia said...

Yay Angela! I'm SO happy he's eating now! He just had to get REALLY hungry :) Way to go Benjamin!

Katie said...

Angela & Matthew-
I cannot tell you how excited I was when I checked this morning and saw that your post was titled 'Encouraging'. I am so thankful that Benjamin is doing well - he will continue to get better just at his own pace. You know how absolutely amazing he is and this is a true testament to that.
Lots of prayers and hugs!
Katie (katiehbzhost) from Babyzone

Lillie's Mommy said...

I'm so happy to hear that Benjamin has decided the bottle is better than the feeding tube! I'm glad you guys are getting some much needed rest and refreshment at the RMH too. Still praying!

Grace said...

Way to go Benjamin - eatin' like a champ!!! That is very encouraging news. I'll be praying that his heart continues to strengthen and work on its own soon.

heidi marie said...

you're right, this is encouraging news!!! seems like things are moving in the right direction. and sounds like after his heart has sometime to heal it will be beating strong on its own. and i can tell you that getting out of the icu is exciting because your little one is doing better, the going to a regular pediatric floor is like night and day...well at least it was for us. looking back i would have LOVED to have stayed in the picu the entire time henry was in the hospital!