Today they moved Haven to a new room. She is still in the Intensive Care Unit, but since she doesn’t have quite as many machines keeping her going, they wanted to move her to a smaller room so they could use the big room for other kids who need lots of machines. We are trying to look at it as one step closer to coming home.

Unfortunately, Haven has had some troubles today. They have had to stop her feedings again because the fat from the milk is leaking out of her chest tubes (you may remember she had this problem before). Also, her blood’s oxygen saturation has been low today and it has gotten lower as the evening has progressed. She is still breathing oxygen in through her nose, but for some reason her blood isn’t getting as much oxygen as it needs. Sometimes after we have a few good days, we have to remind ourselves that she is still a very sick baby that needs lots of attention. If all she had were really good days with nothing going on, then she probably wouldn’t need to be here any longer! Makes sense.

As always, thank you for all of your kind comments and encouraging support. It means so much to us to know that you are checking up on us and praying for our little family. Haven appreciates it, too! THANK YOU.

Haven has had another good day today. She is holding steady while off the ventilator, and they have started feedings again (very little amounts over long periods of time) through her feeding tube. So far she seems to be tolerating the feedings well. They have also started some respiratory therapy since to try and help her breathe better on her own. She is also on oxygen to help keep more oxygen in her blood. Hopefully, once she gets stronger and has more therapy she’ll be able to pull in more oxygen on her own. We’re just so thankful that, at the moment, she is handling this big step so well!

When we came in to the hospital this morning, we were happy to find out that the results from the labs all came back negative. So, there is no infection, but they are keeping her on some antibiotics just as a preventive. Then, just when we thought that was good news, the doctors came in and decided that they would like to take Haven off of the ventilator! We couldn’t believe it. We certainly didn’t expect that so soon since she had been sick all this weekend. So, they extubated her which then caused her to have to do all the breathing on her own. She did great this afternoon! She was very happy, we got to hold her for a long while, and hear her little pathetic attempt at crying (she hasn’t been able to make any noise for a month). It was a very nice afternoon. They will continue to watch her carefully throughout the night to be sure that she is strong enough to remain off the ventilator breathing on her own. Hopefully, she will have the strength to keep up all that hard work without much assistance. We will certainly keep you updated on that. We are excited because this is a major milestone in her recovery. If she can maintain good numbers, things may start to move along.

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.