As we are sitting in the waiting room this afternoon, we realize that Haven doesn’t just have one invasive surgical operation within her first two weeks of life, but three. She came through her Norwood Procedure last Friday (surgery #1), then shortly after she was put on the ECMO cardiac support unit (sugery #2). She had a little bit of a questionable evening last night, but was back at steady levels all through this morning. By lunchtime today, the surgical team and other professionals decided that it would be in her best interest to be taken off ECMO support this afternoon (sugery #3). This is just as scary as it is a step forward. Obviously, coming off of ECMO support is a step to complete recovery, but at the same time, the ECMO unit was some what comforting knowing that it was in charge of her frail little heart and getting blood to her body. The doctors are ready to see how she will handle her own cardiac support and the next week or so will be a lot of waiting (as was this week). Hopefully, she will be able to sustain things on her own without the ECMO support. Thank you for the cards, letters, gifts, comments, and emails. Receiving those serve as continuous emotional support for us. We’ll try to put up a post this evening after the operation to let you know how things went.

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.

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

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

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

We’ve received an important update from Riley. Jeremey says that Haven’s open-heart surgery is finished. The surgery consisted of placing Haven on a heart machine, placing a stint in the hole in her heart to keep it open, and then placing an additional tunnel in the aorta in order to direct blood to the lungs for oxygenation. Finally, they take Haven off of the heart machine and see how she does.

Right now Haven is in critical condition and her heart is being assisted as she has just been through a very strenuous surgery. The next 8 hours are crucial in seeing how Haven will recover.

Please keep watch for more updates.
Your encouraging comments are appreciated by all.

Uncle Justin

We’ve heard back from Jeremey and Alison as the doctors are giving a report about every hour during Haven’s day long surgery.

They have begun reconstructing the aorta so that Haven’s heart can pump blood to her lungs and get oxygen to her body. They are about half way done. After Haven is done with this inital surgery she will begin the busy task of recooperating for a couple weeks.  

We’re thinking and praying for you Haven!

Uncle Justin

The surgeons have begun working on Haven’s heart.  They had some trouble finding and getting to the hole between her atria (the one that has to stay open–see the HLHS page), but they got to it eventually.  They are preparing to start reconstructing the aorta and put in the tempory “tunnel” to get blood to her lungs.  Other than they are a little behind schedule due to their having trouble finding the hole, the surgery seems to be going well so far.