Much to be thankful for

So I've written and rewritten this post in my head several times over about the last thirty hours.  Early yesterday morning I was planning on writing a post titled "My three month old newborn" talking about how Hannah was starting to drink breastmilk from a bottle but ate every two hours overnight and how hard it was to change her diaper with all the lines and wires and how I felt like a new parent again.  Then in the early afternoon yesterday I was preparing to write a blog called "Bumps in the road."  That blog was going to be all about how hard it was to struggle with the set backs she experienced yesterday and how I'm just about done emotionally with all this stuff.  But I didn't want to write a blog ranting and complaining about our hardships this close to Thanksgiving.

So I put it off.  (You're surprised, I know.  Me, stalling.)  And I got some sleep, and I prayed a lot and this morning I took another therapeutic shower and now I'm ready to face the day again.

Yesterday morning Hannah's nurse noticed that one of her chest tubes had cloudy drainage in it.  The cloudiness is caused by chyle (lymphatic fluids) leaking into her pleural cavity.  In english, that means she has fat, namely triglycerides, leaking into her chest cavity.  This happens sometimes after cardiac surgery and the longer you're on the bypass pump the greater your chances.  Hannah was on the pump for a total of 218 minutes, thats a long enough time.  This is a bummer of a setback for us.

To treat chylothorax we had to stop feeding Hannah breastmilk and switch her to a fat free formula.  The time that she has to stay on this formula varies depending on how fast the chylothorax resolves.  She is getting lipids through her central lines since she can't take in any fats orally.  I'm bummed because I thought we were getting closer to breastfeeding again and getting the drains out.  At least one of the chest tubes has to stay in until she stops leaking chyle, could be a few days, could be longer.  She has to stay on the formula that whole time too.  I'm hoping and praying that it resolves quickly and we can move forward.

She doesn't love the formula too much so the nurse put in an NG (naso gastric) feeding tube that goes up her nose, down the back of her throat and into her stomach.  We try to get her to drink at least two ounces every four hours, if she doesn't finish her bottle she gets the rest poured into her feeding tube.  She's sleeping better this morning and was almost in a good mood when the docs were in here doing bed rounds this am.

I'm so thankful for all the nurses and docs are doing for her, and I'm so thankful for all the well wishes and prayers everyone is sending our way.  This is a bump in the road, sure, but when this all resolves and we walk out of here, whenever that is, we won't be coming back.  There are kids in here who will endure years of heart surgery and all the complications that follow it; for Hannah, this is a one time thing.

I got to hold Hannah yesterday for the first time in a week.  The nurse went through a lot of trouble to swaddle her and protect all her lines so that I could hold my baby for a few minutes.  It was wonderful.  I look forward to picking her up like it's no big deal again, I will never take holding my children for granted again.  Also, she is weaning off her oxygen pretty well, hopefully it will be gone by the end of the day.

Please pray that Hannah's chylothorax resolves quickly, I'm not trying to be competitive or anything, but I would love for her to be the fastest resolving case of this that her doctors have ever seen.  In the twenty five years that Dr. L the surgeon has been repairing VSDs he has never seen one in the spot where her second VSD was, so I would like to wow him again.  Also pray that Jeremiah and I's spirits and attitudes  can endure this, there are moments where I feel like we will be raising Hannah in this room.  And this may sound selfish, but pray that my milk supply stays up and I can breastfeed Hannah again someday soon.  She is my last baby and I had really hoped to feed her as long as I can.  I love feeding Hannah, it's our quiet time, something special she and I share, and although bottle feeding can be special too, there's something extra special about being her source of food.

Happy Thanksgiving everyone!

Love, Jill, Jeremiah and Hannah Joy.