One more...

So...I figured that I posted all sorts of fun things to look at, but didn't really give an update to how our little one is actually doing.
She has started to be fed breast milk. She is getting fed through an NG tube that goes through her nose and into her small intestine. She started out only getting about 1cc every hour, (probably about a teaspoon) and they have been upping her dose every 8-12 hours. Last night when we saw her she was getting 8cc an hour. So she is definitely doing really well in that area. Although, eating, or the lack thereof, is what makes her so feisty. She is really really hungry, and I think she is more than ready to try and breast feed, but babies with heart problems sometimes have a problem with not getting enough blood flow to their intestines, and then if they're fed regularly, they can get a serious infection in their gut. In Grace's case, if she were to get an infection like this, it would make her temporarily unqualified to receive a transplant because she would be too sick to receive a heart. So they can only feed her through the tube until they're positive that her blood flow is adequate enough to get food by swallowing.
Also, she is still on oxygen. She is however down to 20% oxygen and still on the "hi-flow". The reason for these is that she breathes too quickly. The nose tubes puff more air into her nose, making her take deeper breaths. They're trying to wean her off this completely as well.
The last thing of note, is that in her recent echocardiogram, it showed that the left pulmonary artery band that they put in with the last surgery, is not quite tight enough. Because of this, she is getting a little too much blood to her lungs. Before she can come home, they will most likely have to go back in and tighten this, or instead balloon up the atrial septum. So, most likely, before she comes home, we're looking at another surgery of some sort. :( Definitely not what we were hoping for. But it could always be worse.
All in all, Grace really is doing well. Topher and I are just learning patience. A lot of patience. Each Dr. and nurse tells us something different, 'she's doing wonderful', 'they're worried about her bands', 'they need to balloon up her septum', 'they don't want to balloon up her septum', 'she could go home in a week', 'she might not go home at all'. Its a constant back and forth game of never really knowing what is going on. So Topher and I are trying very hard to content ourselves with the fact that it's on the Lord's timeline and little Grace's timeline. Not ours. Heavenly Father is taking care of everything and if she is meant to come home she will, and it won't be on our time, it will be on His.
Please please keep praying for Grace to progress. She is indeed doing well, but we are nowhere near the end of the road. Please pray for her to continue feeding well and pray that she'll be able to come off her oxygen. Please also pray that a decision will be made among all her Doctors, if they will balloon her septum open or tighten her PA bands or none of the above. Just pray. It strengthens us so much and we know it makes a huge difference for our daughter.
We love you all so much and are very grateful for everyone's love and support of us.
Please also, if you remember, pray for the other little babies in the PICU. There are so many sick babies, and so many babies that need prayers. One in particular is little Gracie Gledhill. She also has HLHS and is going through quite the trial.
Thanks again!
Love the Andersens



I am a good friend of Michele and Tom Gledhill and can't imagine what you are all going through. I linked to your blog through Michele's somehow. We will pray for your little Gracey too! Know that our Heavenly Father loves you and is mindful of you and your sweet little one. Have comfort that there are many prayers being said for your little family.
--Suzette Gatherum

Anonymous said...

I am a stranger, but we have more in common than you know. Our son, now two, has had his first two surgeries for HLHS at Primary Children's hospital too! Many of your pictures are all too familiar! We have yet to meet anyone who has experienced Primary Children's. Good luck with your beautiful daughter! If you'd like, you can contact us at arvasj@yahoo.com