We had all hoped that Haven’s new medication would dry up her chest drainage.  The plan was to try the regiment for 14 days (Monday will be day 14).  In the cases where the medicine has worked, the fluid gradually decreased over the course of the two weeks until the drainage was very minimal or even stopped all together.  As of this afternoon, Haven has still been putting out a tremendous amount of fluid from her chest.  So, the next attempt to solve the drainage will take place on Monday. Read the rest of this entry »

Well, we haven’t quite finished the medicinal alphabet yet, but we’re still working on it.  Haven has a restful day as mommy and daddy are keeping an eye out on those chest tubes to see how much they’re draining.  They have come down a little bit, but not a whole lot.  Hopefully the next few days will prove to work well for stopping the drainage with medications.  We’ll keep you posted.

Since we are still waiting for Haven’s chest drainage to slow down, not a lot of new things are happening.  They are trying to keep her nourished by replacing some of the protein she is losing through her drainage.  Evidently this is not as easy as taking a multivitamin every morning.  They are starting a special infusion in hopes that this protein will stay in her system longer.  Her white blood cell count is still decreasing- meaning she is getting over her little bout with an infection.  They have been “tanking her up” with new blood for the past couple days until she gets healthy enough to replenish her own blood supply. Read the rest of this entry »

Yesterday evening, Haven took a trip downstairs to the Radiology Dept to have a new IV line put in to direct medications up her arm and to her heart. She had one of these lines previously, but it was getting old and possibly infected. She did really well on her trip there and back.

Today she slept a little and played a little and was overall pretty healthy. We are still waiting to see if the new medication will dry up her chest drainage. They will give the medicine another six days to work before they decide to try to correct the problem surgically. Another trip to the operating room would be a huge strain on Haven so we are really hoping the medicine will do the trick. Besides some painful incidences with a neck rash and a sore bottom, Haven seems to be comfortable and very alert. She loves to stare at her animals hanging abover her bed and study the pictures in her black and white book. Hopefully she will sleep tonight while mommy and daddy are gone and be ready for another big day tomorrow.

Haven slept for nearly 12 hours straight yesterday.  Her nurse told us that she was up all night Saturday.  When we arrived at her room this morning, she was asleep.  The nurse informed us that she was awake all night.  So, apparently she has her days and nights flipped flopped (they say that’s pretty common around here).  Read the rest of this entry »

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.