Saturday, June 5, 2010

Two for the price of one!

Thursday Jacob had his GI appointment. I was very glad because he has been spitting up through his nissen more and having horrible tummy pain. Good news, Jake gained 2oz from the day before! He gained a pound in 1 week. So proud. He is 10pounds 5 ounces now.

Here are some things that were done at the GI appt.:

1. Switched out Jake's g-tube to a larger one because his other one was irritating his skin.

2. Jake may be having reflux still. We discussed the venting yellow. I am going to start venting before his feeds. If I see yellow at that time, we know he needs more prevacid because he still has too much acid. I had been venting after feeds. Yellow after is normal because the belly produces the stomach acid to help digest the food. So this will be an at home experiment.

3. We are switching his feeds back down to 60mls during the day. At first he wanted me to try feeding him an ounce an hour. I barely have a second to breath as it is so I can't imagine doing feeds hourly. I pointed out that he did not have as much trouble when we did 60mls during the day so we are going to try that and see if it helps.

4. Jacob has not been pooping much so he also wants me to give him a suppository at night so he will be pooping two times a day and we will see if that helps.

If all else fails then we will have to have a barium swallow study to see whats going on.

While we were at the GI appointment, Dr. Heydarian came in. I mentioned that I did not think he was there on Thursday's and he said he was downstairs at the hospital and knew his "buddy" was here so he wanted to come see him. I love this man. He is such an amazing doctor and such a sweet soul. His wife is sick with MS which is why he is retiring. I hate to lose him but completely understand. Please pray for his wife.

Dr. Heydarian discussed Jakes lungs with us some. He said that he doesn't see them improving anytime soon and that he thinks we should get a pulmenary consult next time we are in Philly at CHOP. I completely agree. He said that Jakes lungs were damaged because of the restricted septum. They were flooded at birth because the restriction was causing pressure and the blood was most likely backing up in utero. This is why he learned to breath like he does. He retracts very bad in his belly and breathes at least 70bpm when he is awake. I asked if he thought this could harm his lungs more or his heart. Dr. Heydarian did not think it would, he said it just wears him out constantly having to work so hard to breath. Again I was told how "unique" Jacob is. Hypoplasts don't normally breath like this. We not only are battling heart disease but also lung disease. Throw in the tummy troubles and poor Jake has way more than he should have to deal with. However through it all he smiles. Jake was a little puffy a few days so Dr. Heydarian said to give him the Diurill twice a day instead of once. He also bumped his Captopril to 3ml's instead of 2 due to his weight gain.

So we went for a GI appointment and not only had that appointment but also spent at least a half hour with Dr. Heydarian. 2 appointments for the price of 1! I am still so amazed by how great Dr. Heydarian continues to be. He calls Jake "His Buddy" and truly cares about him and wants to help us through this time. We will see them both next week and then they are both going on vacation for 2 weeks yikes!

After Jake's appointment with the GI doctor I went to the pharmacy to pic up all of Jake's meds. $90 worth of meds. The pharmacist was very curious to why an infant was on all of these meds so I told her all about my special little guy. She also informed me that the flagyl he is on interacts badly with alcohol and his lasix is 11 percent alcohol. She said they have severe belly pain and vomit... sound familiar? After getting all Jake's drugs we went to the pediatrician's office to have Jake weighed on their scale so that they have an accurate record.

Later that day I noticed each time Jake vomited was about an hour after his flagyl. The next day he was great with feeds all morning. I started only doing 10ml's at a time and waiting 5 min inbetween. It took 30 minutes but he did not cry at all. I think the problem had been to much going in at once. However an hour after I gave the flagyl he cried horribly. He obviously was having problems with this medication as the pharmacist thought.

I spoke with the GI doctor and he said to stop the flagyl. So I am now back down to giving meds 4 times a day instead of 7. I am going to slowly up his feeds overnight to try and help with his calorie needs. We will weigh him next week and see if he is still gaining well. That is all that matters.

We are still battling the tummy troubles but it seems to be getting much better. Please continue to pray for Jacob. Please pray his breathing gets less labored, his tummy starts feeling better and that he continues to grow big and strong so he can sail through his next surgery.

On a fun note, Jake has discovered his hands and he is becoming quite the thumb sucker. At first we did not like this due to germs on the hands but it is too cute. He keeps sticking his finger over his thumb though and he can't figure out how to seperate it in order to suck it. Its really funny to watch. He is smiling so much now and cooing. Bliss.

As always thank you all for the support and prayers.

Thank you to Grandma, Grandpa, Mimi, Pappy and Uncle Kevin for buying Aidan and Jacob a swingset. It will help so much since we have to be at home all of the time. Here is a picture of Daddy and Aidan putting it together. Will post more pics when it is all done!


  1. I am such a proud Mom knowing what a wonderful person you are " Beautiful Inside and Out " You amaze me daily with your strength and love for your boys..Love and <3 Hugs ........Mom

  2. You have a gorgeous family, and Jacob is extremely handsome. You are doing a great job with everything that has been sent your way and I truly commend you, your faith and stregth through everything is very inspiring. I have been following your blog and praying frequently for Jacob and your entire family. It is the least I feel I can do. God bless you and your wonderful family :)