We’re so thankful for yet another uneventful day. Haven has been doing a wonderful job of shedding all of the extra fluid that she had retained from the last couple of weeks. Everyone seems to be optimistic about being able to get her closed up successfully on Tuesday. She’s got about 36 hours to keep getting rid of those fluids until they try again.

We were able to get a few pictures taken of Haven with her eyes open. We’ll try to get those on the site soon for you to see. She was even able to open her eyes long enough to take in a little bit of the football game this afternoon. We think she enjoyed it. Thank you all for your continued support, encouragement, and prayer. We are so blessed to have family and friends like you behind us through all of this!

Haven has had a relatively good day. Nothing earth-shattering has happened, so that makes it a good day. Her numbers have been good all day and she is working on shedding off those fluids. Since she has been off of the paralytic she has been opening her eyes as well as wiggling her hands and feet. She’s still on a lot of medicines, so she’s not entirely “awake”, but the movement and eye contact is a wonderful sight for us!

Another good thing happened today: Haven is now being fed again through her N.G. tube. They would like to slowly increase the amount of milk she receives over the next several days just to get her body used to digesting food again. We were also informed that she is on the list for Tuesday to be in the operating room getting her sternum closed up. Hopefully, she will lose enough fluid and have good steady numbers between now and then. So, at least for the next couple of days, we wait.

Received an update on Haven’s condition last evening.

Haven had a good day yesterday. The doctor’s are gradually taking her off the paralysis so she is able to move a little bit. However she still needs a closing surgery, so she is still restricted in her movements.

The doctors would like her to release more fluid so that when they close her up there is less pressure on her heart. She is steadily releasing more as she is moving a little.

Hopefully, if she stays stable they could have a surgery to close her up early next week.

More to come,

Uncle Justin

We just met with the head surgeon after Haven’s operation. He said she just didn’t want to do it today. They attempted to close her sternum a couple of times and she did not respond favorably either time. They also attempted to make some adjustments to one of the new “parts” of her heart, but she didn’t like that either. So, they just cleaned up several of her lines and sent her back to the ICU. The sugeon said he thought today might be tricky being that she is still VERY puffy due to the amount of fluid she has retained. Basically, because she is so swollen, her heart gets squished too much by other things (like lungs) when they tried closing her up. They want to begin taking her off of the paralytic drug so she will move around a little bit in hopes to mobilize some of that fluid. The kidney doctors say that her kidneys are in stable condition, and everyone seems confident that she will likely lose that fluid at some point. As of now, they will reasses the situation daily in hopes to try the procedure again sometime next week.

Haven had a good morning. Over the night, her heart rate slowed a bit and her blood pressure evened out and remained steady. So, the doctors wanted to get her into the operating room while her numbers looked so good. She went in at 1:10pm this afternoon and they predict the procedure will last at least two hours. We will post an update this evening after the surgery. As always, thanks for your prayers and your encouragement.

We just spoke with the doctors and they have decided to postpone Haven’s operation to close her chest. Her heart still has abnormal rhythmic activity and is beating too fast. Her blood pressure has been fluctuating quite a bit and often drops well below the level they would like to see her maintain. They will continue to try to address these issues so her chest can be closed soon, but are unsure when that will be: could be tomorrow if they can get things stabalized soon. The fluid retention game is still being played. She swelled up a little more over night. The kidney doctors say the plan is just to wait for her body to move the fluid around until it gets to the right places to be released. That can be a long process (as we are finding out). With the amount she needs to shed, they say her kidneys have a lot of work to do yet. We will continue to keep you updated as we receive information. Other than that, as you may be finding out, we do a lot of watching and waiting as small adjustments are made here and there to try to get Haven’s numbers where they need to be.

Sometimes we start to get impatient, but then we remind ourselves what a blessing she is and that without any of these interventions, she wouldn’t have a chance. The people here at Riley are wonderful and very good at what they do. Hopefully, Haven’s body will be strong and respond well to the treatments she is receiving. As always, thank you all for checking on her, staying in touch, and keeping her in your prayers.

The doctors have decided that they would like to attempt to close up Haven’s chest and sternum tomorrow if they can. This operation (technically #4) should not be nearly as complicated as any of the procedures she has had up to this point, but an operation nonetheless. She had a good day yesterday. Sometime early this morning her heart began racing faster (not ideal) and developed an irregularity in the rhythmic pattern. The doctors are watching it closely today and are hoping to get that irregularity under control before tomorrow’s operation. Her blood pressure has been slightly lower today as well. So there have been some concerns today, but given the couple of good days she has had, hopefully she’ll come out of it alright so they can go ahead with closing her up tomorrow.

We are pleased to report that Haven has had a very good past 24 hours. She gave everyone a bit of a scare yesterday afternoon, but she pulled through and has been doing very well since. The doctors are trying to wean her off some of her meds (she is on MANY meds: one nurse mentioned it might a record high number 😉 ), and they have successfully removed one medication today already. Her kidneys are functioning better and better each day. The doctor says the improvements are small, but improvements nonetheless. Baby steps are fine with us, just so long as they are going forward!

The surgery to take Haven off of the ECMO cardiac support was successful. She has regained a little color since last night and is trying real hard to shed some more fluid. Her heart is now functioning completely on its own without the assistance of any machines, though she is still hooked up to the ventilator and lots of medicines through several lines. We’re glad to know that we have taken a step in the right direction. Now we just wait to see if her little heart will be strong enough to sustain things on its own. She’s been enjoying her daddy’s piano playing at her bed side and is looking forward to the day when she can wear her new booties mommy is knitting for her.

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.