Starting late last week, Haven has been receiving treatments from Physical & Occupational Therapists. Since Haven has not had a chance to progress in ways unhospitalized babies do, these therapists work on helping her move and develop her kinetic skills. This afternoon, we were thrilled to see that Haven reached up to her face and found her nose with her right hand (the only “free” limb she has).

As we are in the process of setting up a Care Conference where we can discuss her status with all the teams involved, we have been talking with each different department regarding the issues Haven is currently battling: sever chest drainage, uncoordinated digestive system, heart function, overall development (in terms of growing and acquiring skills an infant her age should have).

Haven continues to put out an extraordinary amount of drainage from her chest cavities. The source of the fluid is still unknown. The doctors are quite perplexed as there have been very few reported cases of this type (and amount) of drainage. After researching these rare cases, we have decided to try a medication that was successful in a few of the cases. Unfortunately, in order to be on this medication, she can only get her nutrition through I.V. and cannot have feeds. So, despite the progress we have made with her feedings, they had to be stopped this afternoon until she is off this new medication. In the cases it has worked, it takes approximately three to five days to start working then has stopped the drainage within ten days. If this works with Haven, we will hopefully be able to go back to feeding after the ten days. If it doesn’t work, it appears that the surgeons will have to go back in Haven’s chest and search for the source of the fluid. This is not something that anyone wants to do as it can be invasive and may not necessarily yield results. Hopefully, the medication treatment will do the trick.

The problems Haven is having with her digestive system do not appear to be structural, therefore corrective surgical procedures are not an option. This is somewhat good and somewhat bad. It is good to know that she won’t need another corrective operation and that she is structurally sound. It is bad because now her digestive issues are undiagnosable, therefore treatment is not easily available. Basically it has been determined that because of her being on the ECMO support machine compounded with the amount of narcotics she has received over the past nine weeks, that her digestive system has not had a chance to work properly and has become uncoordianated. The only apparent way to deal with this is time. We have found that she does not throw up when the contents of her stomach are constantly being removed through a suction tube, so Haven will be having a procedure done to put a G-tube directly into her stomach through her abdominal wall (this operation will be later this week). She will continue to receive medications (and eventually food) into her small intestine through the NJ-tube in her nostril. The good news is that we were up to 6 mililiters of milk in the intestine before having to stop the feeds this afternoon. The bad news is, feeding is on hold until the chest tube drainage has stopped, and once feedings resume it could be many months before her digestive system gets back on track. Hopefully, we’ll be able to set up a system that will allow us to manage her feedings away from the hospital, even if it is a very complicated system.

We have informed you that Haven appeared to have developed a sporadic arhythmia (random irregular heart beat). The cardiologists have been studying Haven’s heart patterns and activity and have determined that she has an atrial flutter. This is not a temporary condition, and she will have to take medications (on top of her other meds) to hopefully keep it under control. It could take awhile before the right balance of medications is discovered.

Haven continues to be a complex case for all the doctors down here. She now has many teams trying to work together to give her the best care possible (cardiovascular surgery, cardiology, anesthesia, gastro-intestinal, developmental pediatrics, nutritional support group, physcial therapy, occupational therapy). However, with so many different people involved, communication between the different departments can be complicated and take time before actions can be taken. Hopefully, this care conference will help us all regroup and draw up the next plan of action to get Haven ready for the next stage of her HLHS procedures. Thank you all for your comments, your prayers, your love, and encouragement. Haven is nine weeks old today and we celebrate every precious day we have had with her and look forward to those to come.