The past few days have gone well for our sweet little Haven.  The doctors have found a way to manage her feeding problems temporarily as her system has time to recover.  They plan to insert two tubes into her stomach through her belly- a J tube and a G tube.  One tube will suction out the bile to keep her from vomiting.  The other tube will go down into her small intestine to feed her.  We expect the surgery to take place within the next few days.  Once those tubes are in place, they will start working towards getting her off the ventilator.  Although having tubes in her stomach is not ideal, this will allow her to get the nourishment she needs as her digestive system recovers from all it s been through.  The doctors are still trying to figure out how to get her chest to stop draining… she’s definitely helping them gain “experience”.  She has continued to experience heart arrhythmias but they do not appear to be dangerous.  The doctors explained to us that all people have arrhythmias from time to time.  They expect hers will go away as her heart recovers and matures.  Haven has enjoyed new blankets, books, and toys that she has received as gifts.  She wasn’t too fond of the sunglasses, but we’ll give it a little time!

Haven has had a very good day today so far. We have been putting together a new plan for her feedings. We implemented the plan at noon yesterday, and so far, it seems to be working. However, in the past when feeds have been tried, it usually takes a couple of days before Haven begins to show signs of intolerance. So, we’ll need to wait it out another day or two before we can say the plan is actually working. She still only gets very little amounts of food right now, and the doctors say it could take months before she is getting food at a “normal” rate. Hopefully, we can get things stabilized so that Haven doesn’t have to be hospitalized that whole time. Read the rest of this entry »

Haven has been enjoying her weekend in anticipation of getting off the ventilator possibly on Monday.  She’s showing the doctors that she is strong enough to breathe on her own now.  They will continue to watch her throughout the day and night to see how she does.  Although she has been sleeping a lot, she wakes up long enough to enjoy some of her new gifts that mom brought back from her showers in Michigan.  Although she missed her mommy, it seems as though she enjoyed her alone time with daddy.  (She’s been wiggling her long fingers like she’s wanting to play the piano…hmm). 

Haven will be watching the Super Bowl tonight… and she will definitely be cheering for the Colts.

Despite being weaned off some of her sedation and pain medications, Haven slept for most of the day today. She appeared to comfortable and happy bundled up in her blankets (they turned off the warmer today!). They have also come down on her ventilator settings quite a bit. Turns out one of her chest tubes was clogged up. Now that it is cleared up, the drainage continues. Doctors are still trying to figure out where it is coming from. They have several opinions and are doing tests and labs to discover the exact source. They would like to take Haven off the ventilator soon. Assuming her chest stops draining (or as long as the tubes are still there and working), she should have no problem breathing on her own. The biggest concern with her being off the ventilator actually has to do with her feeding intolerance. We’re afraid that what she throws up might get inhaled into her lungs. That obviously would be problematic. Of course, her digestive troubles are still an issue, and they are looking into it. Unfortunately, it appears that the solution may end up just being to wait it out. We’ll see.

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 »