To those affected by a heart defect:

Happy 3 year Anniversary

December 20, 2006 at 9:54 am by Uncle Justin

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!

Posted in Info | 3 Comments »

A little progress

December 19, 2006 at 7:19 pm by Mom & Dad

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.

Posted in Recovery #1 | 3 Comments »

Still resting…

December 19, 2006 at 1:51 pm by Mom & Dad

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.

Posted in Recovery #1 | 1 Comment »

Still waiting

December 18, 2006 at 6:19 pm by Mom & Dad

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]

Posted in Recovery #1 | 7 Comments »

The third day

December 18, 2006 at 3:14 pm by Uncle 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

Posted in Surgery #1 - Norwood | No Comments »

Haven’s first Sunday

December 17, 2006 at 1:12 pm by Mom & Dad

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.

Posted in Surgery #1 - Norwood | 9 Comments »

Just waiting

December 16, 2006 at 7:45 pm by Mom & Dad

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.

Posted in Surgery #1 - Norwood | 4 Comments »

Haven: critical but more stable

December 16, 2006 at 1:08 pm by Grandpa pa J

I visited Jeremey, Alison and Haven last evening. Haven is at a crucial step of her recovery process. Alison and Jeremey have been on sort of a roller coaster ride. Understandibly so.

As of this morning she has stabalized to some degree. That is a positive note. Jeremey and Alison spoke with the head nurse and cardiologist. They were told that having Haven to become stabalized is very important. Though her blood pressure is a little low and her heart rate is a little high, being consistant gives the doctors somthing to critique. If she is not stable it is more difficult to adjust any medications, machine settings, etc..

The past few hours she has shown signs of stabilizing. Lets continue to pray for her comfort and strength.

Stay tune for more updates later today.

Grandpa J

Posted in Surgery #1 - Norwood | 3 Comments »

A good night’s sleep

December 16, 2006 at 10:06 am by Uncle Justin

Mom and Dad had a full nights sleep last night for the first time in about a week. They did not hear any interrupting phone calls so Haven most likely made it through the night. However, she still has an uphill battle to face.

After breakfast there will be a a meeting with the head nurse to get  a detailed update of Haven’s status.

More to come.

Uncle Justin

Posted in Surgery #1 - Norwood | 2 Comments »

A Long Day

December 15, 2006 at 10:17 pm by Uncle Justin

Haven is continually fighting to maintain. As of the most recent report the surgery was completed, but Haven’s reaction has not been optimal. She has been put on life support and is constantly being monitored.

The doctors would like her to be a lot more stable. Although surgery is complete, this is still proving to be a difficult time for Haven.

Jeremey and Alison are trying to get some long needed sleep back at the house tonight, but it is difficult not being able to touch or help Haven as she fights to stabilize.

God is our portion as our thoughts and prayers are continually focused upon this dire situation that we face together.

Thank you all for your faithful support.

Uncle Justin

Posted in Surgery #1 - Norwood | No Comments »

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This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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