Daniel Updates 7/17/18

It is unbelievable to me that it has only been 3 days. It is so hard to keep track of time in the NICU world. The medical center is always buzzing; it seems like no one ever sleeps.

In this post, I am going to break down Daniel’s medical condition first, and then share a story with you.

There are several “numbers” that are important when trying to figure out how Daniel is doing. The cardiologists and NICU doctors look at all the numbers and look at Daniel and then draw conclusions about how Daniel is doing.

1. Frequent echocardiograms: the cardiologists are looking at Daniel’s heart often to be sure the blood flow is right. If one of his holes starts to close, that would be problematic. They did an echo on Sunday and another one today. So far, his heart still looks good because the holes remain open. Remember, these holes are the only things allowing oxygenated blood to flow to the rest of Daniel’s body.

2. Blood gases test: the nurse draws blood on Daniel’s foot to test his lactic acid. If the lactic acid number is high, it might mean there is an infection or something in his other organs. A frequent problem with heart babies is kidney failure, bowel disease, etc. If the lactic acid number is high, then it means his other lower body organs are in distress. So far, Daniel’s numbers have been good each time.

3. Oxygen saturation: there are two numbers that measure this. One measures the oxygen saturation in his lungs and head, and the other measures the oxygen saturation in his lower body. Daniel’s “target” numbers are 75-85, but Daniel’s have been above 95 from birth. Above 95 seems great, and it would be if Daniel was a normal baby. The concern is that Daniel’s numbers are so high because his lungs and brain are getting a lot of oxygen, but his lower body isn’t. When the lower body doesn’t get enough oxygenated blood, it leads to complications with his lower body organs. He is on the lowest dose of PGE (prostaglandins that keep his PDA open), so there is nothing they can do to bring his numbers down. They are going to keep closely monitoring his profusion (the color of his body; his fingernails and bottoms of his feet are frequently blue) and lactic acid to be sure that blood flow is getting where it should be.

Daniel is slightly jaundiced, so he has been under the bilirubin lights today. This is very common with all babies, but especially preemies. I was still able to hold him today, though, despite him having to be under the lights all day.

This morning Daniel’s nurse saw that he was laboring a little more to breathe than he had the past couple of days. He is not in distress, and he still is on room air. They did a chest x-ray today to see what is going on in Daniel’s lungs to cause him to breath harder. Apparently his lungs are “a little wet,” meaning there is a little bit of fluid in and around them, a very common issue with heart babies. They have started him on Lasix once per day to help drain some of the fluid off his lungs. Lasix is a diuretic that will help remove the fluid. Unfortunately, Lasix can also destroy the potassium that is essential to Daniel’s heart, so they can’t give him much of it. Once again, it is a really delicate balancing act to get Daniel the perfect combination of drugs to help him grow.

Doctors also started Daniel on another drug meant to help his right ventricle pump. His heart function looks good, but this should help keep it strong and steady.

There are two teams of doctors that make rounds between 9 a.m. and noon each day. The NICU team is made up of neonatal doctors whose job is to help Daniel grow. The cardiology team is specialized to zero in on Daniel’s heart function. The cardiologists make recommendations to the NICU team, and the NICU team decides on how to implement the cardiologists’ recommendations. For example, the NICU team wants to start giving Daniel a chance to drink breast milk, but the cardiologists are recommending Daniel doesn’t start “nutritive feeds” yet. Daniel is on IV nutrition right now, which means he is still getting calories and nutrition needed to grow, but nothing is going into this stomach and bowels. This really makes Daniel mad because he really wants to eat. He loves his pacifier, and his instinct is to want to nurse, but the doctors won’t let him. If his bowels are stimulated by breast milk, he could get a really bad bowel disease because his bowels aren’t getting adequate blood flow. Tomorrow the cardiologists could say, “go ahead and start feeding him,” and it would be the NICU team that would decide appropriate scheduling and amounts.

I asked the cardiologists today about the Norwood surgery. I was under the impression that Daniel needed to get bigger before they did the surgery because he is premature. We had been given a tentative estimate of two weeks before the surgery. However, today the cardiologists cleared something up. Apparently, it is more about maturity than size, and Daniel’s organs have proven to be mature. His lung function is awesome, and his other organs are great. Ideally, Daniel will keep doing well, and we can wait two weeks to do the surgery. But if something happens, there is no problem with going to surgery immediately. If his lactic acid numbers start going up, or his lungs start having serious problems, or his echo starts looking worrisome, or any number of complications, we could go to surgery tomorrow if necessary. There is nothing stopping Daniel from going to surgery at any time.

Anything can change at any moment.

And now for the story:

Daniel was born at 34 weeks 6 days on Saturday, July 14th at 8:58 p.m. His birth was a hugely emotional experience, and I barely kept it together. When I heard him cry, when they told me he was doing so well, I sobbed uncontrollably. I got to hold him for a few minutes before they took him up to the NICU.

They wouldn’t let anyone up to see Daniel for an hour. They had to put in his IV, do an echo, among other things. I was stuck in the room recuperating, and Brian went up to see our baby boy around 10:30 p.m. They wouldn’t let me go see Daniel until they had moved me to a postpartum room. It was 1 a.m. before I could go see my precious baby boy. I was panicked because they were about to put in an arterial line in through his umbilical cord (UAC). When they put the UAC in, I would be unable to hold him for several days. I had only touched Daniel briefly when they placed him in my arms hours before. I was aching for him.

I got to hold Daniel skin to skin from 1:30 a.m. to 2:30 a.m. on Sunday, July 15. For the next 36 hours, all I could do was look at my baby in the NICU. I pet his legs, rubbed his head, talked to him. But all I wanted to do was hold him.

For the past 3 days, I have tried to pump breastmilk every 3 hours. I was able to produce colostrum magically after holding him that first time. I pumped 7 or 8 times after that first time with no results. This wasn’t hugely disheartening. I have breastfed twice before, and I know it takes several days for a mom’s milk to come in. But when your baby is in the NICU, pumping breastmilk is a really gratifying thing to do. It is the only thing you can do for your baby. It is amazing to know that my body is producing this perfect food taylor-made for Daniel. However, I wasn’t producing.

All day Monday, I was an emotional wreck. They finally removed the UAC late in the afternoon right as I was being discharged from the hospital. This was incredibly bad timing. Right as I was having to leave, they removed the only thing keeping me from holding Daniel. I had so many things on my to-do list: go to Target to get pumping stuff, eat, pump, laundry. People kept telling me I should be sleeping. My body was sore, my heart ached, my legs were (still are) incredibly swollen. Come back tomorrow morning, they said. Daniel will be fine.

It wasn’t fine. It was impossible for me to sleep. I was completely dead on my feet, but I every inch of me screamed that I was in the wrong place. I laid down in the RV and cried. I called my aunt Pam, and she gave me the best advice. She said, “Staci, you have carried that baby inside of you for months. You need to hold your baby, and he needs you to hold him. Go up there!”

When she said that, I immediately knew it was the right thing to do. All of a sudden, I gathered myself together with a singular purpose.

At 11 p.m. last night, I finally got to hold Daniel after almost 48 hours. I wish I could explain to you how it felt. There are simply no words. After pumping for two straight days with nothing to show, my milk came in immediately after holding him last night. It was miraculous. Daniel’s breathing and mine synched, and his body temperature matched mine. He slept soundly the whole time I got to hold him. It was like we were one again, and it was the only time the world felt right in days.

There are so many pieces in place that keep this incredible system turning. Nurses with many specialties, countless doctors and surgeons, hospital staff, etc. Please pray for all of them, as well as Daniel and our family. Thank you for continuing to support us. I am trying to focus on small victories each day, and I am trying to not let the fear of the future steal my joy.