Thursday, September 16, 2010

Doing Good

I apologize that it has been so long since I have written in this blog. What they say is right, no news is good news! Jacob continues to grow and develop like any other baby. You would never know that he has been through so much.

During the day Jacob has been increased to 100ml/feed 5 times a day on the 24 calorie formula. We are slowly cutting out his overnight feeds. The plan is to increase his day feeds by 10ml every 4 days and subtract is overnight feeds by 5. In a bout 5 weeks he should be completely done with the overnight feeds, YAY! This would mean no more feeding pump and a more "Normal" feeding schedule.

After we accomplish that goal then we will work on increasing the day feeds so he gets more volume but less frequently. He is currently doing 5 feeds during the day but only getting a little over 3oz per feed. We hope to increase that to 5 to 8oz per feed but only 3 times per day. This will allow us more room to play with baby food.

Right now Jacob has mastered all of the rice cereals available. The next step is to add veggies. The problem is that Jacob eats every 3 hours. Most babies only get formula 3 times a day not 5. His formula is his main source of calories. The baby food is just for practice at this point. The calorie intake is lower than formula. I can't feed him close to a bottle time because he will be full and will miss out on his main source of weight gain. So for now we are introducing food for fun. To allow him to practice eating by spoon and to let him experience different tastes. Once we condense his day feeds we can start letting him eat more baby food and it will become a larger source of calories for him.

Jacob is still favoring his left side so we are currently working on putting him on his right side more often. The big thing now is that Jake is rolling A LOT! He loves to hold his feet and toddle back and forth. When he does this he can rotate himself into a complete circle. It is so cute! He is also rolling on his sides all of the time. He can't seem to get his one arm out from under his body but he can roll the rest of the body completely over. We work on this a few times a day using toys to entice him to roll over. He cries when he is fully on his belly but he is doing a great job at lifting his body up.

Rolling around

I also notice when I hold him that he supports himself much better now. It makes carrying him around much easier. Jake is also getting his hand coordination down much better. He passes toys from one hand to another. He focuses in on objects and grabs them easily. He is really learning control and its so fun to watch. Jacob is also enjoying Aidan's old sing along stage. He loves to pound on the buttons. Big brother Aidan loves to show him how to do it. I love watching them interact with each other.. such an amazing sight.

Jacob is still working on taking food by bottle. At one point he was taking 90ml by bottle like it was nothing. Lately he has backed down to 40 to 60mls by bottle. I believe it is from teething. He is drooling, chewing, fussing so much lately and I am just waiting for those teeth to pop through. He is putting everything in his mouth. I have to watch him because he will try to yank his g-tube out now and also loves to take off the gauze which is underneath it. Jacob loves the bottle but he seems to get tired or board of it. Whatever he does not take by mouth goes through the tube. Hopefully one day we can get him on all bottle feeds. One day at a time right? I do like having the tube for medications. I never have to worry about him spitting it out because the meds all go through his g-tube.

Jacob is still completely off of his oxygen. He does desat when I first put him to sleep but it always comes back up on his own. I am still going to mention it to the cardiologist just in case. I keep him hooked up to the pulse ox overnight to alert me of any change.


Jacob weighed 15 and a half pounds last Friday. I am going to bring him to the pediatrician this Friday and will update then. He is still in the 50th percentile for his weight and 25th percentile for his heigth. This is huge for a hypoplast as they are usually not even on the growth chart.

So many people around here are sick. Many have coughs and serious colds. I am afraid to leave the house with Jake. His doctors in Philly said his heart is much more stable now however I am still afraid to risk it. If he gets sick it will be much worse on him than it would be on a healthy child. I need to protect him. I don't want to be the overbearing, overprotective mom. I don't want HLHS to define Jake. I plan on giving him as much "Normal" as possible but I also have to do what I feel in my heart is the best thing for him. Right now he is still so small and fragile. I don't feel the need to bring him into stores and heavily populated places. We can go to the park or for a walk in the neighborhood. Family can see him bit I am still going to be very cautious.

I need to talk to his pediatrician and see if I can get a nursing company to come out and give him monthly RSV shots. He will need them and the pediatrician does not stock them in his office. There is NO WAY I am bringing Jacob into a health clinic so I am praying we can work something out. He will need the flu shot as well as monthly RSV shots. I plan on mentioning this to his cardiologist as well.

I am so happy to announce that Aidan is now completely potty trained. All it took was promising the kid 30min on the PC playing games for every time he goes on the potty. Wow a three year old wanting the computer that bad... seriously its a different world we live in now lol. Anyway whatever works right. I had been concerned that it would be difficult to "NIGHT TRAIN" him but he never needed it. From the get go he has woken up dry. He wakes up and goes right to the potty. SO PROUD OF MY BIG BOY! I can't believe how fast he has grown up.

My grandfather has been battling cancer for a very long time now. Recently they discovered that the cancer is in his bones and has now spread even further. There is nothing they can do at this point about the cancer however I am praying for comfort for my grandfather. He is in so much pain however the pain killers create a whole new set of problems and discomfort. My grandfather is the strongest, kindest man I have ever met. Please help me lift him up in prayer.

The American Heart Association offered to honor Aidan at the heart walk this Saturday and let him walk with the National Guard. Aidan was to afraid to walk with them but they offered to still make him a gift bag since he is such a great big brother. Thank you so much AHA! You are so amazing and we are honored to help you raise funds for this great cause.

It's Not To Late!
Please consider taking the time and donating to the American Heart Association. So many lives are affected by congenital heart defects and strokes yet there is not much funding. Help us make a difference. Team Jacob has collected $1300.00. We are #5 on the team ranks. Please help a great cause and donate to team Jacob by clicking on the banner on top of this page.

Here are some pictures of my beautiful baby boy. So proud!

Look at these cheeks!

He is growing up so fast...

Disco Baby!

This is how he sleeps now, so cute


  1. He is so cute and getting so big! So glad to hear everything is going so well. :)

  2. Kathy, he looks SO great! so proud of your little fighter!!!