Haven had MRI’s for brain and liver scans originally scheduled today for 5:30pm.  Sometime this morning, they thought that it might be more beneficial to do them earlier in the day, so they moved them up to 3:30pm.  Getting Haven ready to go on a trip anywhere outsied of her room is quite a cumbersome ordeal, so we started getting everything ready around 1:00 or 1:30pm.  Read the rest of this entry »

As you know, early Saturday morning Haven lost her I.V. access line.  We finally got a new line in place, but were not able to give her her appropriate medications until 5:00pm that evening.  That means she didn’t get her regular regiment of meds for approximately 16 hours.  That’s a long time.  This seems to have caused some less than ideal situations since.  Our biggest concern at that point was that during those 16 hours, her urine output decreased dramatically, and once we got her medications back up and running her urine output remained minimal throughout the rest of Saturday night.  By Sunday morning she had retained so much fluid (because she wasn’t urinating at her previous rate) that she gained a little over two pounds. Read the rest of this entry »

Well, it’s the weekend. That means it’s time for unexplainable things to happen when you least expect it. Very early this morning, Haven’s I.V. access line came out. So she has been unable to get all of the medications that she would normally be getting. She’s fine from a stability standpoint, but what she is missing are things for nutrition and shedding fluids. Since she wasn’t able to get those things, her In-versus-Out numbers aren’t quite as stellar as they have been. She was 56 mLs more out than in. We’re just thankful that she still had a negative balance. That means at least she’s not gaining fluid. The plan is to get a new line put in this afternoon (that’s been a little bit of a struggle as they typically avoid doing these kinds of things on the weekends), then we can start her back up on her meds. Hopefully, she’ll be able to pick up where she left off. Other than that, she’s just hanging out.

This afternoon we had a conference with Haven’s doctors to discuss the issues at hand.  The focus of this conference was for the doctors to reassess Haven’s status and lay out a new plan of action.  They also wanted to make sure that we understood the seriousness of the situation we are looking at.  Haven has a very serious and rare heart condition.  As we all know, she as and always will have only half a heart.  The prognosis for kids with this anatomy is not always a good one. 

As test results are coming back, different pictures of the puzzle are falling into place.  Read the rest of this entry »

Haven’s new doctor (the biochemical geneticist/metabolic doctor) has requested a conference this afternoon which would include us and all of Haven’s other doctors.  We’re assuming this is to align everyone with his desired plan of action and what he is thinking.  We’ll definitely write a post for you all some time after that meeting to let you know how it went.  But in the mean time, we wanted to let some of you number crunchers know that Haven had 266 mililiters more out than in yesterday, so she’s keeping up the great work.  We also forgot to mention yesterday that it was Haven’s four-month birthday.  Happy Birthday, Haven!

…where’d you get those peepers?  We were so happy to walk into Haven’s room this morning and see both of her big eyes looking back up at us.  They’ve been swollen shut for several days.  Yesterday, she was able to crack open one eye just barely depending on which side she was laying on, but today she was able to open them both up a little bit for us.  She doesn’t like to miss a thing so she worked real hard to catch a glimpse. Read the rest of this entry »

We are glad to say that Haven did a wonderful job shedding fluid yesterday.  According to the numbers, she’ll need to shed about 3,000 mililiters more than what she gets put in, in order to come all the way back down to her normal size.  This will be no easy task, but yesterday she was able to shed an amazing 300 mililiters extra!  Three hundred down, 2,700 more to go.  Keep in mind that she needs to shed 2,700 plus enough to counter all the fluid that comes in every day.  Please understand that this is an incredible feat especially in her condition, and we don’t expect her body to be able to make that much urine every day.  (But it would be nice).  Read the rest of this entry »

Haven had a pretty rough day today.  She continues to get more puffy despite her efforts to shed the fluid.  We are working closely with the doctors in order to make certain she is getting the absolute bare minimum amount of fluids (medications, feedings/nutrition, blood, etc.).  We are even working with the head of the ICU on a way to cut back even more fluid by using a different pumping set up for one of her lines.  Read the rest of this entry »

Today was not extremely eventful, but we were able to increase Haven’s feedings.  She is now on her new formula at full strength, and they have been able to increase her volume as well.  Unfortunately, she has continued getting more and more swollen.  The poor thing was unable to open her eyes today due to the puffiness.  Read the rest of this entry »

Haven had a restful day on her part as she slept most of the day today.  One of her favorite nurses brought in a little dress for her, so we jumped at the opportunity to put her in it last night.  It’s a cute spring dress that she looked darling in.  We have a video clip that we would like to get up on the site for you to see. Read the rest of this entry »