Yesterday was a great day for us because we were able to hold Haven for the first time in about six weeks.  In fact, we were so excited about it that we forgot to put a post here on the site!  Some of our nurses and doctors were suggesting that if it were possible to get Haven and all her gear together, it would be a beneficial thing (for Haven AND mom & dad) to be able to hold her.  As you can imagine, it’s quite an ordeal to get her in a position to get out of the crib with all those tubes and wires (I think we counted 17), but our nurse was very willing to accomodate.  It was so nice to hold her again.  We were able to hold her for about two hours yesterday. Read the rest of this entry »

As everyone knows, perhaps the biggest issue that we have dealt with in Haven’s recovery has been the excessive amount of fluid that drains from both sides of her chest cavity.  While it’s true that this is perhaps not the most serious issue we’ve dealt with, it is certainly the longest lasting issue that is preventing her from moving forward with recovery and preperation for her second stage procedure (please refer to the HLHS page for more details regarding the second stage).  It has also been very perplexing because just about every doctor here has said that they’ve never encountered a Norwood baby (or any baby her size and age, for that matter) that has had such cronic chest fluid accumulation and production. Read the rest of this entry »

If you’ve been to the “Pictures” page on the site, you’ve no doubt noticed the tape across Haven’s cheeks to hold the breathing tube in place.  Every so often, that tape has to be changed to ensure that the tube remains secure.  This is not as easy of a task as you might think.  It is at least a two person job and can be a little tricky.  Read the rest of this entry »

Haven’s chest drainage is still on the decline!  We are hoping this will continue throughout the weekend and maybe eventually stop althogether.  We are working on getting rid of the fluid all over her body which causes stress on her other bodily systems.  Other than that, we are trying keep her pain under control and keep her on the road to recovery… it’s been a long road, hasn’t it?

Mom and Dad are enjoying watching their baby grow and develop.  We forget sometimes that she is getting older even though she never leaves her bed.  We are thankful for the time we get to spend at her bedside as a family.  Thank you to the individuals and churches who have reached out to us financially to help us press on through this time.  Thank you also for all the correspondence and prayers- we know that we are in the thoughts of many people throughout the day and that’s a blessing.  We are glad that Haven is touching your lives as she is touching ours.

Yesterday afternoon, in light of some new light shed on a possible connection between Haven’s feedings and her chest drainage, they decided to switch her feedings from mom’s milk to a different formula that might be easier for Haven to digest.  Well, after a few hours of the new formula, Haven got very uncomfortable.  She struggled a good deal trying to tolerate the formula.  She’s such a trooper, but the formula just became more than she could handle.  So we stopped feeding her with that.  It appears that Haven likes to eat only the good stuff.  Read the rest of this entry »

Haven had a very restful night last night.  As you can imagine, we’ve been keeping a close eye on her chest drainage over the past couple of weeks.  In fact, we have a spiffy little graph that we plot our data on, and since we’ve done that some interesting connections have been made that should be very helpful in getting Haven to the place she needs to be.  For example, her chest drainage was considerably less after both of her chest surgeries, however, today we noticed the drainage was up a bit.  Well since we had this graph to compare her drainage amounts now with those of the last surgery, we noticed that the same thing happened then.  That seemed peculiar to us, and after wracking our brains a bit, we were able to draw a connection between her chest tube drainage and her feeding.  After both procedures, her chest drainage began to increase once we resumed feedings.  Interesting. Read the rest of this entry »

We sincerely apologize for not being able to post any updates for the past couple of days.  It appears that the technical difficulties have been resolved.

Haven had a good rest of the weekend.  She continued to sleep quite a bit, but she was awake now and again and was very alert.  Monday afternoon they were able to take her back to the operating room for the procedure on the right side of her chest.  Read the rest of this entry »

Haven had a good night’s rest last night.  The nurse said she didn’t even wink.  After a good bath early this morning, Haven slept ALL day today!  We assume she’s saving up for what will hopefully our last trip to the operating room for this hospital stay.  We had very nice weather today, so mom and dad went for a little walk this afternoon just get out and get some fresh air.  We can’t wait to be able to take Haven with us on our walks. 

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 »