Haven had a good day today.  She spent some time playing with mom and dad and catching up on some rest.  Since she had the chest tube replaced on her right side, both of the tubes have continued to drain.  Hopefully, if she feels better on Monday, she’ll be able to get back into the operating room to get that fluid taken care of.  Her white blood cell count is on the decline, so if she did have an infection she overcame it with the help of several antibiotics.  The cardioversion (the electric zap) appears to have fixed her heart’s atrial flutter for now.  She is on some medication that will hopefully keep things normal.  Mommy and Haven made a nice birthday card for daddy and gave it to him this morning.  We got a nice video of the birthday celebration with Haven handing the birthday card to daddy.  Of course, she liked holding on to the card so much, that it took a bit of coaxing to get her to let go of it!  Hopefully we can get that up on the website soon for you all to enjoy. 

Although Haven’s surgery has been pushed back at least another day due to her high white blood cell count, today has been a positive day so far.  Haven’s physical therapist worked with her this morning and was very excited with how well she is putting up with being in the hospital for three months.  She said that Haven is much more alert and active than many babies in her situation.  She handles all the tubes and wires well enough that she does not need to be very sedated on a regular basis.  This has allowed her to move around more and look around and keep developing even though she’s in the hospital.  She attempts to hold up her head when she is tipped up and she tracks moving objects very well with her eyes.  She enjoys looking at toys, mirrors, and books.  We were pleased to hear that although she is delayed developmentally, she is still progressing and will probably develop quickly once she can be moved around more. Read the rest of this entry »

 Haven’s white blood cell count was still very high again this morning, so the doctors still do not feel comfortable taking her back to the operating room.  However, since fluid is continuing to accumulate on the right side of her chest, they have decided to put in another chest tube until the surgery can be performed.  It is important that they remove the backed-up fluid because if enough fluid builds up on the rigth side, some of it could be forced back over to her left side which could actually reverse the pleurodesis procedure she had last week.  Read the rest of this entry »

Haven has been sleeping and resting all day today. Her white blood cell count is still high today, so the surgery will be postponed and then reevaluated on a daily basis. When they feel that she is stable enough to go into the operating room, then they will attempt the pleurodesis on the right side of her chest. We also replaced an N-J tube into a nostril for feedings and medications to go past the stomach. Otherwise, everything else is the same. Though we know another surgical procedure is a big deal for this little one, we also realize how important it is in order for her to move forward and recover, so we hope that she will feel better soon and be able to have the procedure done.

Haven was originally scheduled to go back into the operating room this afternoon for an attempt to stop the drainage on the right side of her chest, but her white blood cell count made a drastic jump up this morning which is the first sign of an infection. So, very similarly to last week, they have sent off blood tests and started antibiotics to try and fight off anything that might be trying to come on. They say that it is normal for kids to have an elevated white blood cell count after having a pleurodesis done (which is one of the surgeries she had last Tuesday), but they also say that if the count is going to elevate, it usually does it two or three days out of surgery (not six). Read the rest of this entry »

Haven has had a good day today.  Numbers are looking great, and she is putting out much more than she is getting in.  That means she’s becoming a lot less puffy.  Still planning on going back into the O.R. on Monday to stop the drainage on the right side of the chest.  Mom & Dad are hanging in there.  We certainly do love to hear from all of you.  If you haven’t had a chance drop us a note or haven’t done so in a while, drop us an email to say hi or post a comment.  We’d love to hear from you!  havenleigh@mailhaven.com

Puffy though she may be, over the past 24 hours Haven has been able to put out more fluid than what is going in, so she’s working on getty back to normal size.  The left side of her chest (which was draining an unbelievable amount) is now draining very little.  That means that the pleurodesis procedure she had on Tuesday is working.  However, since Tuesday, the drainage on the right side of her chest has increased quite a bit.  We’re going to wait out the weekend and see what happens, but Haven’s surgeon has her on the schedule for Monday to take her back to the operating room to do the same pleurodesis procedure on her right lung.  We are not thrilled with her going for yet another major operation, but we are all confident that it is the right thing to do to hopefully alleviate the chest drainage once and for all. Read the rest of this entry »

As we walked down the long hall to Haven’s room this morning, we noticed something different.  You see, Haven’s room is directly at the end of the hall, so you can see right into it as you are walking down the hallway.  The first thing we noticed was a green piece of paper hanging on the wall outside her room.  There appeared to be writing on it, but we could not read it from that distance.  The next thing we noticed was that all of Haven’s books and things that were on the counter by the window were gone.  Then we were close enough to see that not only were all our belongings no longer in the room, but Haven was gone, too — bed and all! Read the rest of this entry »