Sorry for no post in a couple days. We have been pretty busy taking care of Haven and speaking with the doctors. On Thursday, we were able to arrange a Care Conference for Haven. We met with doctors from all aspects of Haven’s care and asked questions that allowed them to discuss and colaborate. As a result of the conference, the doctors were able to create a plan for the next steps in her recovery. Read the rest of this entry »

Hearts are popular today; however, some hearts are more shocking than others. As we have previously mentioned, Haven’s doctors diagnosed her as having an Atrial Flutter which is a type of heart arhythmia. A very basic explanation: Haven’s right atrium was beating twice as fast as her ventricle. They ran a test this morning that confirmed that diagnosis. The cardiologist told us that cardioversion was the way to treat it. Cardioversion means to change an irregular heart beat back to a normal one. Sometimes cardioversion can be accomplished with medications, but we all are more familiar with electric cardioversion. Does this sound familiar: “Charging….Ready….Clear….. ZAP!”? Read the rest of this entry »

Starting late last week, Haven has been receiving treatments from Physical & Occupational Therapists. Since Haven has not had a chance to progress in ways unhospitalized babies do, these therapists work on helping her move and develop her kinetic skills. This afternoon, we were thrilled to see that Haven reached up to her face and found her nose with her right hand (the only “free” limb she has). Read the rest of this entry »

We are very thankful tonight for another quiet and uneventful day. Haven was comfortable and content for most of the weekend. We are anticipating an eventful week as far as moving forward in her recovery so a weekend of rest was just the thing we all needed. We thank you all for your prayers and encouragement. We think of all our family and friends often and are thankful for your ongoing support and love.

The past couple of days have been fairly steady for Haven.  We’re thankful that over the course of this week, she has tolerated feedings through her NJ-tube.  In fact, the amount of milk she is receiving has been increased twice.  (She started at one-third of a mililiter every hour, then up to one mililiter, now she is at two mililiters every hour–two mililiters is less than half a teaspoon!).  We are expecting this process to be a long one, so patience will be important.  Unfortunately, the doctors were unable to finalize on a decision regarding exactly needs to be done to get access directly to Haven’s digestive system through some other means than her nostrils.  We are trying to schedule a meeting with all the doctors on Haven’s team sometime early next week.  Since she has been there nearly nine weeks and her case is so complicated with so many people involved, we need to all regroup and communicate a plan for her treatment and recovery from this point out.  Hopefully, the hardest thing to deal with this weekend will be trying to explain to Haven why there won’t be a Colts game on Sunday.   

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 »

IT’s FINALLY HERE!

Haven in real live sound! Check out the video posted below to hear the cute whimper of my baby niece! This was filmed at the end of January before she had her ventilator tube inserted again.

More to come!

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.