Wow, the first thing I noticed going through all this old material, is my spelling is terrible. Particularly the medical terms. I have a fleeting memory that as the blog goes forward, and I hear and see the medical terms, I understand them more and am able to correct my spelling mistakes. We shall see. During this first week, Lisa remained in critical care as well. During the course of Lisa's week long stay in the hospital, she received 5 units of blood to replace what she lost during the emergency surgery. I've never told that story in detail, but will probably tell more of that story on this blog as we go along.
Day 1
Dad talks nurse into taking a Polaroid of Summer - this was not difficult. The result is the first shot of Summer entitled “Summer Marie Muccio - All fight and long legs”. This picture is not posted because mom’s caring and wonderful sister took the picture home with her. We will post it as soon as we get it back.
Vitals on Day 1 hold steady. We are told the first 48 hours are the most critical. At 48 hours this number would shift to the first 72 hours are vital. Numbers like only 30% of premies born at 24 weeks survive. This is freighting to us because we assumed that with technology today 90% of all premies survive. This unfortunately is associated with premies who have had a few more weeks gestation. Nevertheless, Summer is a girl and girls show significantly more ability to survive than boys of the same gestation. We are thankful for any help we can get.
Throughout the first 24 hours, Summer shows remarkable vital signs. Her oxygen saturation was excellent requiring only a 25% mixture of oxygen to air to be used in the ventilator. Her heart rate was strong and stable and her blood pressure was also stable - although she had some help from a medication call dopamine. This medication helped to control her blood pressure. Her lungs were treated with three doses of sofactine - a miracle product composed of calves lung and human protein. This product is sprayed inside of her lungs to prevent them from sticking together in case they collapse. The procedure is similar to pouring a think, slow moving, gloopy substance into your own lungs. Very torturous, no human in their right mind would allow it to happen. The substance is a life saver for premies. This product, along with the high frequency ventilator pushed back the limits for premature birth. Now, at these premature ages, these babies have some tools to fight. I hope they work.
Day 1 also allowed us to meet with many of the nurses who will be caring for Summer during the coming months. All of the nurses were caring professionals who went to considerable lengths to explain every detail of the NICU and what they were doing to help Summer. As considerable task as it is, they put our mind at ease.
Day 2
Summer seemed to have settled into her life in the NICU. She seemed almost comfortable despite the many tubes and wires surrounding her little world. She seemed almost at home. She was yawning and moving about. So much, in fact, a little sedation was necessary to keep her from pulling out her tubes, hoses and wires. This day was the first day mom was well enough to pay a visit. As we approached the magical 48 hour point I thought we were going to make it. After driving home to get some shut eye, the Neonatoligist called. Summer was experiencing her first life threatening situation. The level of potassium in her blood was way too high. One doctor said she had enough potassium in her blood to kill a horse. Wow! Lisa and I said a prayer that evening. In the morning Summer was with us and her potassium level had dropped. “Where does the potassium come from?”, I asked early that morning. Well some of it comes from the transfusions she receives. Here is the first of many Catch-22 situations we will face over the coming months. The same life saving transfusions of blood she is receiving is polluting her system with life threatening potassium. It would be up to Summer’s kidneys to scrub out the unwanted potassium. Her kidneys seem to be working just fine. She was out of this part of the woods. But - she still has a long way to go. The roller coaster has just started.
Day 3
Today the radiologist came to visit Summer. The radiologist is interested in performing an ultra sound on Summer’s head. The purpose is to look for blood, or bleeding in the cranium. This kind of bleeding could mean Summer experience a stroke or worse. Also, certain areas of her brain are 99% fluid. These areas were meant to be developed in the fluid environs of the womb. But now outside the womb, even the pressures of gravity could cause little blood vessels in her brain to rupture. As I waited outside the NICU the longest minutes of my life ticked by. With blood comes the potential for brain damage. No drug or high tech equipment or loving care could reverse that. Summer experienced a very traumatic first few minutes of life. There was bound to be some bleeding. To our astonishment, there was no evidence of blood. These ultra-sounds will continue throughout the coming months to further assure us of this extremely positive situation.
Day 4
Today, the doctors also began to inform us of the presence of a small value in Summer’s heart called the ductis. This valve bypasses blood around the lungs when babies are in the womb. Once outside this value has to close in order for the lungs to be effective. As of today the ductis was still open. A cardiologist would be in the next day to evaluate the situation. There are two courses of action necessary if the ductis does not close naturally. First a medicine call indicine will be given to Summer in three doses. This course of treatment can be given up to three times. If this does not work the only remaining option is surgery. Along with the surgery comes an all expense paid trip to another Hospital because the surgeons who perform the surgery will not come to this hospital anymore. This sounds like a bureaucratic battle that one day I would like to wage. But not today.
Day 5
The ductis closed. My friends at work informed me that when the word hit the office there was practically cheering going on. I didn’t realize how many of my friends were following my every reported word in the same manner Lisa and I were experiencing it. We are fortunate to have these kinds of friends in our life and we thank you one and all for your support and prayers. We fought the ductis battle and won, but before the end of the day we were plagued by another villain. Today Summer experienced a ruptured nemo thorax in her right lung. This is a tiny rupture or the sacs in her right lung. This rupture allows air to escape into the chest cavity. As the air escapes into the chest cavity it has no where to go so it collapses the lung itself. A tube must be painfully inserted into Summer’s chest to drain off the air. Two catches here. First, because the tube evacuates excess air in the chest cavity, the reduced pressure allows the lungs to expand more fully - a favorable condition - but not one you would intentionally insert a chest tube into a premie to achieve. The second catch is that this tube provides a straight conduit through which infection can get into Summer’s body. A very bad thing. Well for the time being, the tube is working. In a couple of days the lung will heal itself and the tube can be removed. Toward the end of the day, Summer’s oxygen saturation level was doing so well she required minimum ventilator settings. She was, in fact on some of the lowest settings possible with this ventilator. Also, she was breathing practically room air (21% Oxygen). Things are really looking up. Also, we kicked that 72 hour milestone in the ass are up to 120 hours. On this night Dad sent out his prayer chain. Perhaps you received it, prayed for Summer, and passed it along.
Day 6
Today was a good day for both Summer and parents. The prayer chain must be working. There were no major set backs. Summer looked strong. One of the nurses applied a petroleum product to her skin and her skin looks great. So good, the Billy Rubin lamp was actually removed. Days like this are needed for parents to gain there sanity. There is abundant hope and Summer is a strong baby. But we know we are on a wild roller coaster which is out of our control. The responses Dad got from the prayer chain give us strength and hope.
Day 7 - Friday February 13, 1998
Disaster strikes. This time Summer’s left lung collapses. But not from a nemo thorax. This time because there was so little pressure in her lungs helping to keep them open. Her oxygen saturation was doing super. Also, the less pressure moving through her ruptured right lung the better. Catch-22, these lower ventilator settings led straight to the collapse of the left lung. The only solution is to increase pressure to the ventilator and hope that we do not blow another nemo thorax. Most of Day 7 Summer is on maximum ventilator settings. Her oxygen saturation numbers are extremely low. No one knows why. Three cultures are taken in her throat, her blood, and in her chest cavity to check for the presence of infection. It will take over 24 hours to get the result of these cultures. Lisa and I are waiting on pins and needles. In the mean time Dr. Z has a brain storm. Maybe Summer is hiding air in her chest cavity that cannot be seen on the frontal x-ray. A lateral x-ray is ordered. And sure enough, Summer was hiding air below her lungs. A quick adjustment of the chest tube and with Summer’s, now fully inflating lung, oxygen saturation is back to normal.
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