To those affected by a heart defect:

Feedings on hold again

January 28, 2007 at 8:33 pm by Mom & Dad

As you know, Haven started receiving milk through her new feeding tube on Friday night. Unfortunately, over the past 24 hours her tolerance of those feedings have taken a wrong turn. She has been heaving and vomitting quite a bit since yesterday. Strangely, none of the milk has been coming up. So, due to this, they have stopped her feedings again. Though the gastro-intestinal specialists wanted to wait to see her until she was off the ventilator, we’re hoping they’ll come and take a look tomorrow given these more complicated circumstances. Read the rest of this entry »

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New pictures coming soon!

January 27, 2007 at 6:00 pm by Mom & Dad

It’s been a fairly quiet day today. Haven has been getting milk through her new NJ feeding tube for over 24 hours now. Since the food is currently bypassing her stomach, she has taken it pretty well to this point. They have even been able to increase the amount of milk a little. The gastro-intestinal doctors will examine her stomach problem further once she is off the ventilator. The ventilator is being very slowly turned down. Hopefully, next week she’ll be strong enough to be breathing on her own. Her chest continues to drain, but the rate is slowing down. It’s amazing to see that over two liters of fluid has come out of this little baby’s chest in three days! We have a new set of pictures that will be appearing on the site soon, so keep your eyes out. There are some awfully cute ones!

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Yet another tube

January 26, 2007 at 5:36 pm by Mom & Dad

Haven’s chest tube on her left side surprisingly continues to drain (she has drained nearly 2 liters of fluid since that tube was put in). Thankfully, the output appears to be a little less every two hours. The doctors decided that a second drainage tube on her right side needed to be put in due to an increase in the amount of fluid that has built up over her right lung. They put that in this afternoon and it drained about 3 ounces (as much as the other side did) initially. Everyone here is amazed at where all this fuild is coming from. They have some theories, but at this point the source remains unknown. Read the rest of this entry »

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Where does she keep it all?

January 25, 2007 at 6:44 pm by Mom & Dad

So getting all that fluid off Haven’s lung was a good thing. However, since we last posted she has drained about twenty more ounces from that very same tube, so they have become quite concerned about where all this fluid is coming from. She has had some ultrasounds and x-rays today to look for problems, but they haven’t shown anything abnormal that would cause so much fluid to build up. Thankfully, the rate of the drainage has slowed down over the past few hours, but it is still concerning. Read the rest of this entry »

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To pick up where we left off last time…

January 24, 2007 at 12:37 pm by Mom & Dad

Yesterday’s procedure to put in a drainage line into the left side of Haven’s chest cavity was successful. Everyone was surprised to find just how much fluid they were able to pull out of her chest. They initially pulled out three ounces and since have drained out twice as much!

To put that in perspective: 3 ounces of fluid on a 9-pound baby’s lung would be like a 120-pound adult having 40 ounces of fluid on their lung. That’s more than a large drink from McDonald’s!!! No wonder her lung was collapsed. Her numbers improved almost instantly when that fluid initially came off. So that side is continuing to drain. However, chest x-rays from this morning indicate that the upper lobe of her other lung is partially collapsed as well. They don’t believe there is as much fluid there as was on her left side, so they are attempting to treat that without putting in another drainage tube. We’ll see. Read the rest of this entry »

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Busy Morning

January 23, 2007 at 1:39 pm by Mom & Dad

Early this morning, they transported Haven down to have her second digestive test. This test determines if there are any structural problems with her digestive system. Results won’t be available until later this afternoon or tomorrow. As soon as they are in we will post those results.

Due to her frail condition, she came back from the test with a few more problems (possibly caused by the stress of being transported to the test and back). Many doctors from several areas of expertise have been constantly giving Haven their attention all day. She is retaining a lot of fluid in her chest, particularly on her left side. Read the rest of this entry »

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In Haven’s Time…

January 22, 2007 at 6:57 pm by Mom & Dad

Putting Haven back on the ventilator seems to have been a good decision. She has been holding pretty steady today and has been comfortable and restful. Today the doctors started focusing on some of her other health issues realizing that her digestive issues are having an effect on her ability to be strong enough to breathe on her own. She took a big trip down to the first floor for a GI test where they took pictures of how well food moves through her stomach. The results of the test: food is taking a long time to move through her stomach and some is being refluxed back out.

For us, these results were far from earth shattering, but Read the rest of this entry »

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Rough Night

January 21, 2007 at 5:32 am by Mom & Dad

Since our last post, Haven has struggled with a couple of issues. Last night, though she was tolerating milk through her feeding tube, her body didn’t seem to know just what to do with it from a digestive standpoint. At surface level, it appears that when food goes into her stomach it stays there and doesn’t move on through the system. Therefore, as food keeps going in, it just inflates her stomach more and more until the natural reaction is to throw it all back up. So, they have decided to stop her feeding until they can do some testing to figure out what the problem is exactly. Read the rest of this entry »

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Getting some food…slowly, but surely.

January 20, 2007 at 6:42 pm by Mom & Dad

Haven started receiving milk through her feeding tube today. She’s been getting it very slowly over the past six hours and has kept it all down. We’re thankful for that! She’s having some problems with the drainage tube in her chest, so the doctor is coming down this evening to decide what to do with that. Rumor has it that if Haven does well enough this weekend, she may be moving out of the Intensive Care Unit and in to a less critical unit sometime early next week. That would be wonderful–just one step closer to going home!

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Hungry Baby

January 19, 2007 at 12:20 pm by Mom & Dad

Haven had a good night last night and so far today her numbers have been holding steady.  She’s been awake most of the morning and fussing quite a bit.  They started feeding her pedialyte through her NG tube as well.  So far, she’s kept it down.  It seems that the next big obstacle is getting her diet problems fixed.  The main issue here is that she hasn’t eaten hardly anything in her 5 1/2 weeks of life so her stomach doesn’t take food too well.  They’ll be trying a couple of things to get her to respond well to getting nutrition through actual food in her belly.  Thankfully, since she is off the ventilator, we were able to hold her for a little while this morning.  Hopefully, things will keep moving in the right direction.

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This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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