Meeting with NEO Nurse Practitioner...

Today one of the nurse practitioners from the NICU came up and it couldn’t have been better timing because Ryan was here and I didn’t even expect her today. I guess you could say it was more of a reality check, hello, wake up Amanda this could be ugly kind of conversation. Needless to say the dark reality of what could be ahead in our journey isn’t pretty. Right now, today (5.2.09) I am 25 weeks and 6 days according to the most recent ultra sounds. Yes, I too thought this week marker the start of 2, but no, I was wrong. I took notes about various stuff so here, hope it doesn’t scare the daylights out of you like it did me initially. Again, keep in mind these are all possibilities and no guarantees.

She started with where I am right now…approaching 26 weeks what kind of odds these babies would have. To sum it up Reece if born any time in the next little bit she said there wouldn’t be anything they could do. His body would be fragile, the lungs would not be strong enough to tolerate breathing machines, and tubes wouldn’t even fit into his nostrils. As for Jason his survival right now would be 75% (maybe a little high- just a rough guess). She said of those 75% that survive 1/3 turn out as perfectly healthy little babies, another 1/3 have mild problems, and the other 1/3 have severe problems, but do allow the baby to live for a given amount of time. She said typically in order to be fit for machines a baby must weigh a little over 500mg (17.63 oz.). Currently as of last April 26th Jason was 600mg and Reece was 300mg. In a two week span of growth Reece gained 100mg. So if he were to continue at this rate he would need 6 weeks to gain weight to catch up to where Jason is right now. Aside from that I was reading online and came across this statistic as well from KidsHealth. “Due to many recent advances, more than 90% of premature babies who weigh 800 grams or more (a little less than 2 pounds) survive. Those who weigh more than 500 grams (a little more than 1 pound) have a 40% to 50% chance of survival, although their chances of complications are greater.” In general I feel as though it is fairly consistent with what the nurse was saying.

WHEN THEY ARE BORN (keeping in mind this is prior to 30 weeks of maturity): When the babies are born she gave me the warning that they try to show the babies quickly to the mother, but a lot of times due to the need of needing to stabilize the baby they do not get to show the babies off even for a second. When they are born they wipe them up and take them off for stabilizing. She said the first step is to give them medication called Surfactin (not sure on spelling but pronounced “sur-fact-in”). From there they will run a line through on of the arteries in the umbilical cord to monitor the babies’ blood pressure and to draw blood for testing. A second line will run through the single vein that is in the umbilical cord. This line is used for feeding. They will start the babies off with sugar water and slowly as they adapt they will add proteins, electrolytes etc. through the line to provide addition nutrients. Regardless of how premature or what the conditions are both babies will be put on antibiotics immediately and be monitored for infections around the clock.

LUNG DEVELOPMENT: Prior to 35 weeks babies are usually always hooked up to a breathing machine of some sort or another. In continuation to the above section the babies would be hooked up to a breathing machine now to help them because their lungs are not developed. The risks are high with breathing machines because of the amount of trauma it adds. She compared it to tapping yourself in the same spot for a long period of time. Their little lungs are constantly being pumped and this can cause chronic lung disease. It could be that the babies don’t need to go to the high level breathing machine when they are first born depending on their maturity. If that’s the case they might start out on a c-pap which is less traumatic. The babies must be a minimum of 1kg (35oz. or about 2.2 lbs) in order to come off the C-pap. If the babies were to develop lung disease or apnea from the trauma they can give them steroids once they grow later. If they are given too early it causes brain development problems. There are also other medications that they can start them on.

NUTRITION: After the babies have grown strong a feeding tube can be inserted into the stomach rather than using the line through the vein of the umbilical cord. If less than 34 weeks old the babies willmost likely be feed 3 oz. a day on the feeding tube. After 34 weeks they can be bottle feed once a day if showing signs of being capable to suck. The nurse said it is encouraged that the mother pump and bring the milk for the babies because of the vitamins and nutrition. The babies cannot be breastfeed till they have been 100% bottle trained and are no longer relying on the tube. Around 35 to 36 weeks if the baby is starting to suck the bottle then I can pump and have him suck to get use to the idea. (Poor kids- what a tease!!!)

BLOOD LOSS: A lot of little preemies need blood transfusions. She talked to use about the blood bank and if we felt safe using that blood and assured us that its been checked and monitored. She also told us we can have blood donated for the boys, but since we do no know their blood type right now you can be assured you will have what you need. IN addition to blood is only good for around 2 to 3 weeks and it takes a bit of time to be checked and processed. Needless to say if our boys need blood they will get it from the bank and if they are running low or something once we know their blood type we will go from there. (One step at a time…) She said not to be alarmed if the babies lose weight once they are born before they begin gaining. She said due to the amount of fluid drawn from them, this is often common. Along with that is not to be alarmed if the babies have jaundice. Again jaundice now days can be treated pretty easily, but they do have to wait till they are a certain age if medications need to be given. Otherwise they will be placed under lights.

BRAIN: This is the part that scares me the most. Due to the profusion (lack of blood) Reece is already dealing with he is at much higher risk of being born with brain damage or bleed of the vessels than Jason is. Basically here is the deal…the babies can be born and we think great they are doing wonderful and making progress in the NICU. Around 6-8 weeks they will do a scan (MRI) for brain damage. If bleeding is detected from the vessels before that we are looking at a whole world-wind of possibilities, operations, and developmental delays. If the results from the MRI show a grade 4 bleeding on either sides of the brain that is when they will ask if we want to continue care. What does that mean? It means the life of the boys) are completely in our hands and we have to decide if we want to give up and not put the sweet angel through pain, stress and trauma, or we continue the fight knowing that the odds are not high and the baby will live with severe brain damage. If the results come back and are lower we are not in the clear either. The bleeding blocks the drainage of spinal fluids which if they get backed up your looking at cerebral palsy, mental retardation, and learning difficulties. As the nurse said, again, we won’t know this right when the baby is born or even soon after. It can take up to several weeks/months for the baby to be stable enough for the brain scan. In addition to learning difficulties can not be detected until the child starts school. Bring on the learning difficulties if you must bring my baby any harm at all. I can handle and will help in every way shape or form I can to prepare my baby for school! Cerebral palsy and all of that stuff is again going to play a much great impact on their lives.

EYES: This was another big area of concern. Babies born prior to 31 weeks or less than 1500 mg are at risk of having problems with their eyes and will be seen by an eye specialist. Treatments are available such as laser eye surgery and medications to repair the veins that damage the retina. However if the baby is not yet stable enough to undergo these procedures the vessels could rupture and cause blindness. Typically after 30 weeks this is not as great of a risk.

HEART: There is a vein or tube or something called the heart PDA that everyone has. Babies are born with their open because while in the womb it helps with blood flow and doesn’t close till after birth. Should the PDA not close they monitor to make sure blood does not flood the lungs. This is treated with a medication and then if needed surgery. Very few babies have to undergo the surgery according to the nurse, but it does happen.

There’s a standard protocol used by the NICU that provides each baby on a certain level of care based on its gestation (and also weight in Reece’s case that has a high gestation but very low weight) which is as follows;

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