Saturday, July 14, 2007

The story of Maryam in the NICU.

Maryam was born December 9, 2006 at 5:26pm at 25 weeks and 2 days gestation. The reason she was born so early is because I got diagnosed with preeclampsia with HELLP syndrome. My blood pressure was up to 180/120, my kidneys were failing, my liver was failing and I had pulmonary edema. I went in to the hospital on December 5th, the doctors told me that I wouldn't leave the hospital until the baby was born. They told me that I had to get a steroid shot to strengthen her lungs and it takes 48 hours for the steroid to take effect. They said they would do everything in their power to keep her inside of me for as long as possible, but if my life ever became in danger, I would have to have an emergency C-Section. They went over all the statistics of her possible survival. 35% chance at life. 35%, I'll never forget that. We were told, that because I wasn't 25 weeks yet, we had to chose whether or not we would want her to be resuscitated or not. How do you make that decision? We didn't. We said, we'd make the decision when we had to. Thankfully, we didn't have to! We managed to keep her in for 4 days. On the fourth day I could barely breathe, they did a chest x-ray and decided it was time, that was at 5pm, she was born 26 minutes later.
She cried! When they took her out, she cried! It was the happiest sound my ears had ever heard. It meant she was alive! She was taken immediately to the NICU where she was intubated and given all the care she could get. She had IV's of medication and fluids, a heart monitor, a pulse oximeter, blood pressure monitored by an art line and 24/7 nurse supervision. Brett took pictures of her so I could see her. I was still too sick to see her.
On the Wednesday after she was born, I was finally well enough to see her when one of her lungs collapsed. She had Respiratory Distress Syndrome and couldn't breath on her own. Again we had to hear all the statistics on survivability and complications. They changed her ventilator settings from conventional to high frequency. They did this because the high frequency settings gave her 600 breaths per minute and kept her lungs fully inflated all of the time. That night, I finally got to meet my daughter, I cried. Not because I was still in pain, but because I could see how much she was suffering. I felt so guilty. I think I still do. I feel like if only I could have kept her in longer, maybe one more day would have helped. She was so fragile, so small, she couldn't even breath. I was scared, I felt like I was just waiting to see if she was going to die.
I was discharged the next day. I know that some of you know how this feels, and some of you do not, but leaving your baby in the hospital is a horrible feeling. We all have these images in our heads of bringing baby home from the hospital, what will she wear? Will she like her car seat? Will I know how to use the car seat? I didn't have that. My thought when leaving the hospital was, will she still be alive when I come back to visit her?
One of the complications of being born early is having a hole in your heart. In the womb this hole is important because it carries oxygen through the blood to the lungs and rest of the body. Outside of the womb your lungs bring the oxygen into the bloodstream. This hole was making it harder for her lungs to work because normally it closes on its own when the baby is born at term. They gave her some medicine to try to close it, it didn't work. She had to have a PDA ligation to close it. That was her first surgery. She had to be put under general anesthesia and paralyzed for the procedure. They made an incision under her left arm, went in and stapled it shut. I still can't believe they used a staple.
After the surgery the docs changed the settings on her ventilator from high frequency to conventional. This setting simulates normal breathing patterns. Her oxygen percentage was still set very high because now she was diagnosed with Chronic Lung Disease. This was brought on by the high frequency settings on the ventilator. 2 steps forward, 1 step backwards. Story of our NICU life!
On January 18th, I was able to hold her for the first time. I think that was the happiest day of my life. Words cannot properly express how elated I felt. For the first time I felt like she was going to make it. She was going to live. I was holding my baby, she was finally real. The next morning she was off of the ventilator! She was put on a CPAP. This assisted her own breathing. It meant, she was taking breaths on her own, and when she couldn't the CPAP would help her. And when she just couldn't take a breath at all, it would do it for her.
At about this time, she started getting eye exams. When babies are born, their eyes stop developing and don't start developing again for 6 to 8 weeks. When babies are on ventilators the extra pressure from the vents cause eyes to develop faster than they should. The faster development causes them to develop erratically. This is called ROP, Retinopathy of Prematurity. In February she had to have laser eye surgery to correct the problem. As of today, the ROP is gone and so far she hasn't developed any side effects from the disease! Hooray!
After the ROP surgery Maryam developed a Staph infection, what luck, right? Her incision from her PDA ligation and the open wounds from her IV's got infected. Fortunately for us the antibiotics worked and the infection went away. Until it came back! But they gave her more antibiotics and an anti-bacterial bath soap and voila, it was gone for good.
After all of that, it was just hurry up and wait. Her lungs gradually started getting better and as they did, they decreased her oxygen amounts. Eventually she was out of the critical end of the nursery and moved down to the Feeder/Grower section. I affectionately referred to it as the "Doer Gooder" section. At this point she started taking the bottle, not well, but trying. She started with Occupational Therapy to get her to do better on the bottle. She has severe reflux, so after or during almost every feeding she throws up her food. Her lungs aren't strong enough to take a full feeding. It takes a lot of energy to suck, swallow and breathe, but she sure tries hard!
On April 30th, she was discharged!!! Hooray!! She was sent home on 10 medications, a feeding tube and 1/4 liter of oxygen per minute. Talk about overwhelming! We have the oxygen delivered to the home when she starts to run out. She has an Occupational Therapist come to our house for a weekly visit and a home health nurse that comes for a weekly visit too.

1 comment:

  1. wow, jen... amazing........... (jen lane cameron)