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 »

Haven’s new doctors have been busy implementing their plans to discover what lies behind her issues.  They have also been very kind enough to spend some time with us discussing the ideas behind everything they are doing.  Turns out that apart from her heart there is quite a bit of concern about her kidneys, her thyroid, her muscular system, and her liver.  It’s not quite clear at this point whether or not the problems are related, come from the same source, or are isolated occurrences.  Read the rest of this entry »

It’s been a bit of a big day.  Since Haven has been struggling with issues that do not appear to be directly related to her heart’s function, her care has been transferred to the Pediatric Critical Care team.  This team of doctors will have a more wholistic approach to managing Haven’s recovery.  We feel this is a good decision that has been made and look forward to having some fresh ideas come to the table. Read the rest of this entry »

Haven had a restful day today.  They increased her feeding amount.  She’s now up to 3 mL per hour.  Still a long way to go, obviously, but she seems to be tolerating them well.  Unfortunately, she continues to retain fluid in her tissues and the cause remains unknown.  Since she is not putting out as much as she is getting in, she is getting bigger and bigger, again.  Read the rest of this entry »

Haven had a good day today.  She allowed us to take several steps forward on the ventilator weaning process.  Due to her fluid retention, she received some new medications to aid her in shedding some of that fluid.  We also are in the process of scheduling a visit to the cardiac catheterization lab this week.  They plan on sending in a little camera to look around Haven’s vascular system in search of anything they could be missing that might be causing some of these peripheral problems that Haven has been experiencing.  This will be a new experience for all three of us. Read the rest of this entry »

Haven had a good day today.  Her numbers were fine all day, but we didn’t make any changes to the ventilator settings.  We’re hoping to resume progress there tomorrow.  She is still retaining lots of fluid and is quite puffy again.  Her abdominal area is still very distended, but it doesn’t appear to be giving her any more breathing problems.  The only real excitement today was that her G-tube almost fell out of her stomach again.  Read the rest of this entry »

So Haven’s belly just keeps getting in the way of her lungs.  We had an episode much like we had the other day when her abdomen was so distended that it caused her some breathing distress, so today we had to readjust some of the ventilator settings to help her cope with that.  But, just like the other day, once she got rid of some of that air that’s trapped in there, she was fine and we were then able to come back down on the ventilator settings to where she had been previously.  Read the rest of this entry »