May 29, 2009

Adventures in the NICU

The rest of the days in the NICU are a mostly one big blur with a few very notable moments in between. I can't even begin to recall all of the drugs Alexa was on at the time. She has several thick binders filled with her medical history. The nurses in the NICU must understandably document e v e r y t h i n g. I guess the thing I remember the most about the NICU is all the machines, the screens, the beeping and alarms. They are not too loud but still enough to forever permeate your brain. Not really, the thing I remember the most are the people. The other baby's, the other parents and families, the nurses, and neonatologist's. It is a time in your life when you are very aware of your surroundings, very in tune with your senses and feelings as everything can be a clue or link to your child's condition. Like learning to read the body language of those attending your child for example.

In the NICU, I learned very quickly what each machine did, I learned about blood gases, oxygen saturation, metabolic rates, pain meds, c-pap, respiratory therapy, catheterizations, fluoroscopy, the patend ductus arteriousis, prostaglandin, broviac lines, picc lines, pressure gradients and the list goes on and on. I was a person and a mom that was/is very into natural remedies so this was a whole new world for me. I both hated and was grateful for it. During it all, I was pumping and exhausted but determined to get some breast milk saved up for my little one.

Shorty after birth, Alexa was put on Prostaglandins to help her Patent Ductus Arteriosus (PDA) remain open after birth. The PDA is a blood vessel that connects the pulmonary artery to the aorta. In utero, the PDA basically shunts the blood away from the lungs as it does not need to pass there to become oxygenated as this job is fulfilled by the placenta. In baby's like Alexa with Transposition of the Great Arteries (TGA) they are receiving no oxygenated blood to their bodies so the PDA staying open is critical and buys them much needed time. The only other way she was getting some O2 to her body is through the mixing of unoxygenated blood with oxygenated blood that was occurring in her Ventricular Septal Defect (VSD) or whole between her lower ventricles, so in this case having a hole is/was a good thing. The Prostaglandin however, makes babies feverish, feel like they have the flu, gives them red skin rash or patches at times, and the worse gives them breathing apnea, periods of time during which the baby will "forget" to breathe, which in turn requires a breathing tube to help them.

There was a moment of panic that set in, after Alexa's oxygen saturation levels kept falling, even with all the help from the machines and drugs. At that time it was determined rather hastily that Alexa would need an Atrial Balloon Septostomy via a heart catheterization. A catheter is a special thin tube passed into the blood vessels through a small needle-stick in the groin or forearm, and guided into the heart. Through this catheter, a special device that resembles a balloon is passed into the heart. The wall between the right and left atrium is punctured and the catheter device pushed through the small hole thus created. The balloon is then inflated, and the catheter is pulled back through the small hole, tearing it and making it larger. The aim is to create a large enough opening between the two atria, so that blood can freely mix across it, and improve oxygen supply. This procedure allowed Alexa to now have a hole in her Atrium called an ASD on the top chambers of her heart as well as the VSD she was born with. In some babies this is enough to sustain them for a while before a big surgery is needed. Unfortunately, it was not the case for my baby girl. More to come about that later.

This is suppose to be a relatively uncomplicated procedure but for Alexa, it was not. The docs had a very very difficult time inserting the cath into her groin. They ended up puncturing her vein and developed a Deep venous thrombosis (DVT). This basically means she developed a blood clot in her leg. The clot can block blood flow. If the clot breaks off and moves through the bloodstream, it can get stuck in the brain, lungs, heart, or other area, leading to severe damage. So now not only did we have the heart problem we had this to worry about as well. After trying several times to insert the cath, they gave up and took her back to try to insert the cath with the help of a fluoroscopy team. Fluoroscopy basically meaning the use of X-rays to see motion, as opposed to still X-ray films. They were not able to insert the cath through the groin and instead the dosc said they had to insert the line through a vein in her neck, fish it down to her leg, and then pull it up and into her heart. This was the most stressful day thus far. When we saw the the doctor that performed the cath, come back from the OR we literally ran to embrace him as we saw the smile on his face. We were so happy that was finally over.

We again just had to hurry up and wait. We had to wait to see, how/if this would help her enough to prevent surgery and we could go home ... for a while. Plus her surgeon was also out of town, so the NICU became our home away from home.

1 comment:

  1. The hours directly surrounding Claire's septostomy will remain some of the worst in my life. We ended up having an "emergency" baptism just before she went to the cath lab because she looked so bad and the team was so worried about her. I can only imagine how difficult it was for you having complications on top of an already too complicated situation.

    Thank you for sharing your story, it's so important to have it out there!


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