After some readjusting, Haven is back on track this evening. They plan on slowly lowering her ECMO cardiac support considerably throughout the night tonight. If she handles that alright, they would like to take her off the ECMO tomorrow afternoon. You may or may not remember, but coming on or off of ECMO requires another operation. So, if she does well tonight and through the morning, she will be back in the operating room tomorrow to take her off of the ECMO machine. She will most likely remain in the Intensive Care Unit for some time after this operation as there is much healing that is yet to be done. We are happy about the prospects, but as with any operation, it can seem scary. So we’re excited and anxious all in the same breath. We’ll keep everyone posted throughout the day tomorrow (Friday).

Haven had a good night and continued to show promise through lunch today. They have been trying to contine to wean her off of the ECMO cardiac support, but in continuing to do so this afternoon, her blood pressure dropped again and so we are stepping back to re-evaluate things. There are so many variables to troubleshoot when something goes wrong that it can take a long time to fix a problem. Hopefully, we can get things back on track for this evening so Haven can be closer to getting off of the support. She was getting rid of fluid fairly well (relatively) this morning, but again, this afternoon she stopped moving it like she was this morning. We’ll try to keep you posted as things change either way.

The doctors came by this morning to let us know that they are pleased with Haven’s heart:  the repairs, and the recovery so far.  Unfortunately, since she did go through so much trauma last Friday they are still concerned about her kidney function.  They are meeting with the Kidney folks today to discuss options for Haven.  She obviously has a LONG way to go before we can all go home, but we are happy to hear that, for the time being, her heart is doing well.  Their current goal is to be off of the ECMO cardiac support by the weekend.

Thanks for the Happy Anniversary wishes.  We’re so happy to have each other always, but especially through times like these.  Hope to hear from you soon.

Here’s wishing Jeremey and Alison a happy 3 year anniversary today, and a prayer for many good years to come to you and Haven.

“What therefore God hath joined together let no man put asunder.” – Matt 19:6

You guys are quite a testimony to the patience and hope that can come of tribulation through the faith of God. (Romans 5:2-4) Love all three of you!

May God continue to be your portion, and his grace sufficient! Amen!

They have begun to SLOWLY reduce Haven’s reliance on the ECMO cardiac support machine. Thankfully, her numbers have held steady over the past six or so hours even through the adjustments. They plan to take her a little further yet tonight if her body can continue to handle the extra work, then let her rest at that level until tomorrow. We assume, if all goes well, that they will try this same process tomorrow to hopefully have her off the ECMO support by late this week. One of the biggest issues we are facing at the moment is Haven’s retention of fluids. As you may have deduced by seeing all the tubes in her pictures, Haven is receiving many medications and fluids through several I.V.’s. Unfortunately, her kidneys are still not producing any urine to rid her of those unneeded fluids. The more time that passes without working kidneys, the greater the concern. Hopefully, by allowing her own body to do more of the work, her kidneys will spring back into action: just no sign of that happening yet.

They have decided to begin trying to wean Haven off of the ECMO cardiac support. They began turning the machine down ever so slightly a couple of hours ago. She did alright for a little while, but her blood pressure has fallen again, so they have decided to wait some more. She’s just not ready for it yet. We spoke with a doctor regarding her kidneys not working well. They are working on trying to come up with an intervention that will stop her body from swelling. As always, thanks for your prayers and support. Hopefully we will have some good news to report to you all some time.

The cardiologists, the surgeons, and all the other doctors helping Haven have decided to continue to wait things out a little longer. We believe the plan is to start adjusting her levels and flows to try to get her heart to do more work a little bit at a time. Hopefully, they will begin this process tomorrow. She still releasing very little fluid and continues to retain lots of water due to her kidneys not functioning properly. We were able to get a few more pictures. Hopefully, we’ll get those up on the site soon.

[ Sorry for the delay Jer – the pictures are up in the pictures section now. – Justin]

This is the third day after Haven’s surgery, but only the second since she has been somewhat stable. I talked to Jeremey and he said that the situation is the same as it was during his last post.

The doctors are waiting to for Haven’s heart to get some rest before they try to deal with Haven’s acute kidney failure. In the meantime she is swollen because of the water she is holding.

Hopefully, Haven will start releasing some fluid or her heart will get enough rest to continue treatment.

Meanwhile, prayers are still being offered. Jeremey will probably post this evening.

Uncle Justin

Haven’s heart rate has come down some more over the night (this is still a good thing). Due to the trauma of the surgery, Haven is experiencing Acute Kidney Failure, and attempts to use medications to make her urniate have not been successful as of yet. If you thought she was a little chubby from the pictures, she’s definitely more puffy now: very swollen due to not being able to produce urine. We still think she’s very cute, though. The doctors do not plan on any more intervention regarding urine production until tomorrow unless the situation worsens more than what it is right now. As always, thanks for the comments and the emails. We can’t respond to everyone personally right now, but do know that we do read each and every one and appreciate them very much.

Haven’s heart rate has dropped just a little (this is good—it was very very high). She is currently on ECMO (a type of life-support system) which is basically pumping blood through her body for her so her heart can rest a little. The doctors want her heart to rest for at least 60 hours (from last night) before they decide to move forward with the recovery process. She is breathing on her own, so they do not need to use the “lung” portion of the ECMO machine. This is a good thing. They would still like to see some of her numbers improve, but are happy that she is at least holding steady where she is at now (a steady trend is better than a downward trend). At this point, we wait, and pray that Haven’s body is able to cope during this very strenuous time. She has three nurses that are assigned only to her and many doctors and surgeons are checking on her throughout the day. We’re still on the roller coaster and will be for some time. Thank you for all of your prayers and support. Your comments and emails have been so encouraging and comforting to us.