Last night, they decided to try a new plan for feeding little Haven.  They started by giving her a very tiny amount of a special formula (that is broken down and contains less fat) over a three-hour period.  They did this for six hours and things seemed to be ok.  However, around six o’clock this morning, they decided to stop the feeds because her body began rejecting the food just as before.  So, of course, all day today, because she still had food in her system from last night, she has not been feeling the greatest.  They did some ultrasound tests of her abdominal area today in hopes of shedding more light on this issue.  After a couple of days off of feeding to let Haven recover, we will hopefully try Plan B…….they just have to decide what that is first. Read the rest of this entry »

This morning Haven’s chest had accumulated enough fluid for the doctors to put in a new chest tube.  As expected, the tube drained a lot of fluid and created more room for her lungs to expand.  Needless to say, Haven is much happier now and spent the day napping and staring at mom and dad (and the Puffin).  The doctors agree that even though her medical progress has been stalled, she is growing cuter and cuter every day. Read the rest of this entry »

Haven had a calm day today as she slept most of the time. We usually like to get a post written earlier than this, but over the past several hours Haven has been rather uncomfortable, so we have been trying to get that figured out. Read the rest of this entry »

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 »

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!

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 »

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 »

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 »

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 »

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 »