Sunday, May 9, 2010

Cath Tomorrow!

Happy Mother's Day!

I got out of the hospital for a short while today. Went to the King of Prussia mall with my mom and my sister and her family. It was nice to get out for a bit but I missed my boys! Today was extra hard on me being apart from Aidan on Mother's Day. It was very hard but I had a good day despite the sadness I felt from missing him.

Jacob's Cath is supposed to be tomorrow morning. No time yet. Praying they don't reschedule him again. Praying he does well. Praying for so much tonight. I am so afraid for him having to go back on the vent again and through yet another procedure.

Not sure which I fear more... Staying here or going home.

I was looking at Jake today watching him work so hard just to breath and a part of me got really scared. I do want to go home, I miss Andy and Aidan. I also want Jacob to be ok and I know he is so fragile. It is up to the doctors but I fear both. I don't want to be here another 3 months but I also am so afraid to go home. I have no problem taking care of him. I do everything for him while I am here. Completely comfortable with the g-tube. I just am afraid of all of the "What if's". It is nice having a full time nurse right there but I guess we will have to leave at somepoint. It will be nice for him to know life outside of the hospital. I can't wait until his second surgery has passed. They are so much stronger after that.

Today's update...

Feeding Issues:
He always gets tacky at that time of day. I promptly told him that he was not aloud to give me trouble on Mother's Day lol. This did not work, he was very worked up because he was hungry. He always gets hungry early but we can't feed him too much or he will get sick. So his sats were in the 90's (they like them to be 75 to 85 for their phisiology) and his heart rate was around 180. We took a walk then he calmed down.

Another issue we have had to deal with is everytime he eats lately he seems to bare down like he is constipated. This causes his heart to brady real quick (low heartrate). Its obvious its because he is bareing down and its really fast and comes right back up. Adults do that to but we don't realize because we are not on monitors. Along with that he is wretching some. Most babies can spit up but Jake has a nissen and can't throw up or burp so he can only wretch (like a dry heave) Horrible to see but its only one or two times and after a feed so we think its from gas. He has only done it this week since he has been on an antibiotic. Wondering if his stomach is more sensitive due to that. So the plan is to vent his g-tube more. It's how we burp him. We attach the extension tube and put a syringe without the plunger on the end. Open the extention and the air will come out. Wierd, just odd. But hoping it works, hate to see him uncomfortable.

The heart cath is tomorrow and we should get data on his heart and lung function. It will be nice to know exactly what is going on in there. Heart echo's and xrays give an estimate. This will be actual pressures and information. If there is any narrowing they can fix it while in there. He will need anethesia and a vent so please pray for him. It will be hard to see him go through this but I know he is a fighter and will be ok.

Prayers requested:
1. Pray for Jacob tomorrow and that everything looks good
2. Pray Andy and Aidan get better so if we can go home later this week, we can all be together.
3. Pray for our family that we can get through this time and be happy and at peace even if we have to remain seperated for another few month's
4. Pray that Jacob will be safe if he does come home and for me to have the knowledge to know if something is wrong and be able to keep him safe. I feel like I know him well and I will be ok but these kids are some complex. Pray for God to watch over us.

As always, Thank you for all of the prayers and support.


  1. Praying for peace for you and your family. I am definitely keeping Jacob in my prayers today while he is going through his cath. I know every procedure is scary and for some reason caths really scare me a lot. God is watching over all of you!

  2. Praying praying praying for your family today! I know exactly how you feel about wanting to go home but being afraid at the same time. I felt the same way when we brought Aly home. I was terrified to not have a screen of numbers to look at to know exactly how she's doing at any given moment. You'll do fine at home. I've learned that you know more than you think you do. :)Heart Hugs,

  3. I cant imagine how happy you must be to finally take Jacob home ! I read through your blog and it is so encouraging to hear this news. I had twin baby girls Kaira and Krisha on April 7th, the younger one had been diagnosed with HLHS and is still in hospital post her stage 1 surgery. She has also been through many ups and downs but is now in the NICU and main focus is on her feeding and growing before we can bring her home. Just hoping it is sooner than later. Wishing you the very best for Jacobs return home !