It is hard to believe our babies are four weeks old already! Here’s what has been happening recently.

Hazel has a couple heart concerns in the last week or so. She has a PDA, which basically means there is an open valve in her heart. The valve is there in all babies in the womb and normally closes within a few hours after birth, but in preemies can remain open. The valve’s normal function is to bypass the lungs when they are not used for oxygen in the womb. Now that Hazel has been born, it is causing oxygen-poor blood to mix with oxygen-rich blood. She is receiving medicine to try to close this valve, in hopes that she can avoid surgery. This treatment is somewhat unproven, but has no negative side effects so it is worth the try if we can avoid surgery. The doctors believe this condition is causing her heart rate and oxygen saturation to periodically drop to alarming levels. Surgery has huge risks at this stage, which is why they have not rushed her to the OR already.

The other concern is her heart ultrasound also shows either a PFO or VSD, which is some type of hole between two chambers in the heart. She is too small to be able to discern which condition they are looking at, but oddly enough this is a less concerning condition for the doctors in either case. It sounds like this may close up with development over time or may be watched after she comes home and needs correction when she is older.

The good news is her oxygen needs have come down recently, and it seems like her numbers are not dropping as frequently, and her heart rate seems to be a bit more stable. She is up on her feedings, which will help her grow and develop. She seems to be doing fairly well in spite of her heart conditions.

Grant had a PDA like Hazel, but his was made smaller with medicine, and he had to stop feedings while on the medicine. We were thankful the PDA closed, but not long after, over the period of a little more than a day, he took a turn for the worse and suddenly retained a lot of fluid (he had gained approximately a third of his body weight in just fluid over 2 days) and his oxygen needs skyrocketed. He was swapped from one ventilator to another and then again, receiving 100% oxygen at the highest pressure. They also added nitric oxide to his air supply to reduce blood pressure in his lungs. They gave him the heaviest diuretic they have on a constant drip to help him pee off his extra fluid and catheterized him just in case there was an issue there preventing him from peeing. He was on antibiotics, antifungal, and heavy steroids.

That night as we called the NICU to check on the status of the kids, the nurse reiterated how very sick Grant was. She started talking about how sometimes kids surprise her and turn around, but at this time they had done absolutely everything possible in medical terms. She told me about having a family meeting with the doctor, because they wanted to be sure we knew how grave things were. The nurse continued suggesting how we might want to take the last opportunity to just be able to hold him. In a roundabout way, the nurse was telling me that my son was dying. I certainly understood just how bad things were, but I refused to accept it. Saying goodbye to Marissa was difficult enough, and I did not want to believe this was it for Grant. All we could ask in this case was for Grant to turn things around and heal on his own. We needed a miracle. We got a lot of prayer chains going.

The next day the nurse gave us an update on his progress. He had a couple of very wet diapers, and in fact when the nurse went to change him, he peed so hard the catheter came out and was making a bit of a fountain in his isolette. It really is funny to think how simple things like peeing are what we pray for, and we are so thankful when we hear about very wet diapers. Over the next couple days he effectively peed off 3/4 of a pound of fluid, returning to his weight before he started going south. His oxygen needs have dramatically improved, so he is no longer on the drip of heavy diuretics, they have reduced his nitric oxide, and he is almost weaned off the steroids.

During this time, there have been many other temporary items of concern or some that are uncertain. It seems to be daily that we hear of a pick line, art line or peripheral IV line failing. Sometimes they have been unable to replace the line, and the kids are running low on sites to introduce new lines. Before having kids in the NICU, I really had no idea how tough it is to be a preemie. I always thought it just meant they were small and needed to be kept warm and have lights on them. In reality, every day is survival for them. Every minute, in fact. A “good day” for an extremely premature NICU baby is far worse than the sickest day most adults have ever had.

Julie has been receiving home care for her incision, as all the infection from her multitude of procedures and the ruptured amniotic sac had been affecting that. Antibiotics and the repacking of her incision have helped her improve, and she is very close to having the wound closed up. She is a trooper though, and still gets out to see the babies every day. She is still so hopeful for the day she can hold Hazel and Grant and bring them both home.