It’s midnight and we just got our little baby settled down to sleep. She had an eventful (but good) day today. We took a trip to the first floor to get a new IV line put in. She was very lively today and we had fun talking to her and her beautiful big eyes. After such an exciting day she started feeling a little uncomfortable and unsettled this evening so we bundled her up and spent the last few hours by her bedside telling her stories and singing songs to comfort her. Although it is not fun to see our little baby scrunch up her face in pain, it is fun to be able to comfort her and feel that she needs her mommy and daddy. Tomorrow all the test results should be in to see if her episodes this weekend were due to an infection. We are hoping she will get lots of rest in the meantime and continue to move towards recovery.

Haven is still trying to stay comfortable despite her upset stomach. We are still awaiting the results from the tests to see if there may be any infection. She slept most of the day and has been awake and bright-eyed this evening. Hopefully she will recover quicker than it takes us to figure out what’s wrong 🙂 .

We posted yesterday that Haven was not holding down much in her stomach. Last evening and through the night that situation did not improve. That along with some stool issues she has been having has caused the doctors to believe that she may have some digestive issues or even have contracted a sickness. They have done some tests to try and narrow down the problem. Unfortunately, those tests take up to three days to obtain results. Poor Haven was feeling so bad due to her body being in a constant state of heaving and having bowel movements that they sedated her this morning so she wouldn’t have to be awake. This, in turn, has put coming off the ventilator and any other heart-healing progress on hold until these issues are resolved. The doctors say this can be any number of problems, and they are trying to narrow it down to know the best way to treat her. We hope that this sickness isn’t too serious because babies with Hypoplastic Left Heart don’t handle being sick very well. We’ll keep you posted as we find out more.

Haven had one of her three chest tubes removed this morning.  This is good because it means that her chest is leaking less fluid.  There are also rumors that they may attempt to extubate her (take her off the ventilator) sometime during the next few days.  Nothing is for certain, of course, but they have been coming down on her rates slowly the past couple of days.  Currently, she is doing more breathing than the machine does for her. 

Unfortunately, she has not been able to keep a lot of formula down, and she often will get pukey (even when there’s hardly anything in her tummy).  So, they’re trying to figure that one out.  Not that we are happy about her tummy being upset, but we’ll take a tummy ache over heart problems any day. 

Fluids are still coming off at a good rate.  She’s almost back down to her birth weight!  She has also been very awake and alert the past several days which has been neat for us.  When those bright big eyes are open, it’s hard for us to leave her alone!     

Haven is looking great. As she continues to rid herself of unnecessary fluids, her heart has been maintaining satisfactory numbers. They would like to see her heart rate come down a little, but her blood pressure has been doing so well that over the past 24 hours, they have turned off two of her medicines. Several days ago, they had to stop feeding her milk because she did not take to it too well. They went back to a special formula that is less fatty than milk, and she seems to do alright with that. They are hoping to remove a couple of her chest tubes early next week. We’re still moving in the right direction. Don’t forget to check out those new pictures that have been posted!

We just spoke with Haven’s cardiovascular surgeon, and he informed us that this time the operation to close Haven’s chest was successful! So far, her heart has tolerated the smaller space and is holding steady. He reminded us that the next 12 to 24 hours are extremely crucial to see if she can maintain acceptable levels of blood pressure, heart rate, blood gasses, etc. She still has her three chest tubes and is still on many medications. They estimate Haven will remain in the Intensive Care Unit for at least a week or two yet before moving to a less critical unit where she can begin recovery before coming home (assuming there are no more set-backs, of course). So there’s still a very long road ahead for her, but this was a step in the right direction.

We were reminded today of how thankful we should be to have our little girl right now. The condition she has is the most serious heart problem to deal with and to recover from, and she has been down some very bad roads up to this point (ECMO support for 7 days, open sternum for 18 days, kidney failure, edema, not to mention the whole heart thing!). So we’re hoping for no more wrong turns. We sure do love our little Haven and are very thankful that she’s come so far!

We are celebrating the start of this new year with yet another uneventful day. Haven is doing a great job of continuing to get rid of unneeded fluids as well as keeping all of her numbers steady. Mom and Dad have certainly enjoyed the last few days of stability and improvement as we get ready for another attempt to close Haven’s chest tomorrow afternoon.

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