Wisdom Heart

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So when I left off last time, the side effects of Sophia's treatment with prostaglandin was causing us a great deal of anxiety. But of course we believed this was all that was keeping her alive.
The next major step in her treatment was to get a more accurate diagnosis. This required a heart catheterization. This was done by inserting a small catheter in the top of Sophia's thigh near her groin. It would be carefully guided into her heart and a contrast dye would be injected. After this video pictures were taken that would show the way the heart and its major vessels moved the dye in and around her heart. This would give surgery and cardiology a clearer picture of her heart's anatomy. This was scheduled and in the meantime we focused on feeding Sophia.
As I had mentioned in an earlier post, Sophia latched on and breastfed immediately after her birth. And Patty and I had no intention of feeding her anything other than breast milk.
The problem was that Sophia's heart prevented her from having the energy necessary to breast feed. So we went for the next best thing and Patty started pumping her breasts. She met with a lactation specialist who helped her in every way possible but her milk never came in the way it should. Even though she religiously pumped every three hours around the clock, she was not able to produce the volume necessary to provide all of Sophia's nutrition. In the beginning, there was enough, but soon it became necessary to supplement with formula. This was the first of many blows to our first-time parent idealism.
The experience of feeding Sophia, even though it was with a bottle, was the greatest feeling ever. Like I mentioned above, there was not enough breast milk to feed her that exclusively. But every drop my wife was able to pump was given to her. And no matter how little that was, Patty never gave up and continued to pump the entire time we were there.
It was such a helpless feeling to be going through this and I think providing even the tiniest amount of breast milk made her feel like she was contributing to Sophia's health.
More on this later.
The catheterization was our first experience with a surgical procedure for Sophia. The risks were pretty small but it was still difficult. And of course we had just a vague idea of what they might find. When we received the results they were received in a variety of ways. For Patty and myself it confirmed that her heart had some serious defects and revealed some that had not been mentioned before. We were informed that there was a good possibility that the defects could be repaired but would require a series of open chest and open heart surgeries.
Cardiac surgery would be consulted and the next course of action would be determined. They explained that there was no evidence of the "patent ductus" I mentioned in an earlier post. It was determined instead that a series of small collateral vessels were carrying blood to the lungs instead. Therefore, the treatment with the prostaglandin seemed unnecessary and was discontinued. The specific diagnosis she was given was Tetralogy of Fallot with Pulmonary Trunk Atresia and the small collateral vessels I mentioned above.
After cardiac surgery reviewed the film, they decided that Sophia would need a surgery to either gather these collaterals into a more substantial vessel and connect them to the heart or to do a surgery called a Blalock-Taussig Shunt.
But both would require the vessels to grow to a workable size for the surgeons.
Back in the NICU, we were still dealing with feeding issues. Sophia was doing pretty well with the bottle but was not taking the volume she should. It would be necessary for us to get to a target volume in order to be released. With the prostaglandin gone, the apnea was much better and Sophia seemed to be a little more awake. Soon she was taking the necessary volume of formula. My wife continued to pump.
The plan was that Sophia would go home and regularly visit Dr. O'Laughlin her cardiologist. Once the vessels were large enough or something else made surgery necessary, she would return for surgery.
But, before we could go home we had to do a PC(Parent Care) status night. This meant that we would have a room in which we could stay overnight with Sophia and all of her care would be our responsibility. This was daunting with all that had happened up to this point. But we were ready to take our daughter home. There were two things that were really good about this night. First, we could stay in the room and even sleep. The NICU policies prevented parents from sleeping in the pods. You could stay all night but if you fell asleep they would kick you out.
Second, and this is huge, NO MONITORS. The funny thing is that everybody reassured us that she would be OK without them and that if we had to put her back on them she couldn't go home. But, we were thrilled to be rid of the thing that had driven us mad for weeks now.
There were no alarms and no slowly ascending and descending numbers. I suppose we could have stopped paying attention to them a long time ago. But I think we had become seriously dependent on those little numbers to tell us how things were going. But now we were free.
The night went fine and we were released the next day. We were there for three weeks and were so glad to go home.
More tomorrow-Michael