Tuesday, July 2, 2013

And the other shoe drops...

I chose to let my "Meeting Hudson" post be exactly what it was. I wanted to describe my emotions through it all without junking it up with all the medical issues we face. Still those issues are such a huge dictator in our life right now that there is no way I can side step them. So lets just jump right in to it.....

During our visit with Hudson we were approached by a NICU Dr. that informed us Hudson had a complete atrioventricular canal defect or an  AVCD/AVSD. This means that the separation between the 4 chambers of the heart are not completely formed. Because of this, the oxygen-rich blood mixes with the oxygen-poor blood (this isn't a scientific explanation, otherwise I would have copied a google link or definition) and there is too much sent to his lungs. Essentially flooding them. His heart has to work harder to make sure everything gets enough oxygen..it beats faster.

  Hudson, just like every baby also has a PDA or patent ductus arteriosus. This artery should have closed after birth, his of course did not. The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.

Coupled with his defect ...it's bad news bears for Hudson. Surgery to correct this life threatening defect (avcd) would usually need to be completed between 4-6 months old.

As sad as it all was to take in we knew that whatever it took we would do. We knew that there was a fix. Hudson just needed a few days to work on this new breathing thing and then we would get to take him home....right?


 He required just a whiff of oxygen to keep stable. Every time they tried to wean him off he would dsat. He had many echo cardiograms, lung x-rays and blood draws. They sent his blood to the geneticist at UNC Chapel Hill and we waited days for the results. Mainly, we were just awaiting the confirmation of his Ds. There are 3 different types....one of them actually being genetic. It was important for us to know what to expect in his future. We had already been researching and planning out his care. We wanted our boy to have the best possible outcome. 
Shane and I decided once we found out we were having a boy that we would be done having babies. One boy and one girl...who isn't OK with that?!
But honestly, after feeling robbed of an amazing birth experience I couldn't see myself ending on this note. If the Ds( Down syndrome) was genetic that of course would be a factor to consider with in our decision.
 The blood results came in about a week later. That is when we discovered surprise number 123940930442. The Dr. started with the information on his Downs. In Hudson's case just a spontaneous defect of the 21st chromosome. Hence, he has Trisomy 21.
You see, those with Ds have 47 chromosomes while you and I have 46. Hudson has 48. That's right, my boy is extra extra awesome.
  This is where we talk about said 48th chromosome. The blood results also found that he had yet another syndrome...REALLY??????? and the two combined were so very rare that there is virtually no medical cases to reference. He is somewhere around the 5th case reported in the world...yes, that's right....like, only 5 people ever have had this combo...(since medical/genetic testing has started to document) Who expects that kind of news?!
  This syndrome isn't life threatening and doesn't change the outlook of his life expectancy. Basically, the symptoms are physically opposite of T21. A tall lengthy build to include long fingers and big feet(so maybe he didn't get those from daddy!). These children will often be taller than average. So it will be interesting to see how his T21 and this new syndrome mix. We are flying blind through that part of his life since only time will tell.
 Now, if we fast forward a few days after that bomb...during a routine blood CBC they found some immature white blood cells. These malformed blood cells are found in cases of TMD(transient myeloproliferative disorder) and leukemia. Mmmmhmmm that's cancer. This will just be monitored with frequent reviews and if it continues to be an issue, there will eventually be a bone marrow biopsy.
WTH?!? Can my kid catch a break already?
Shane and I had been a constant in the NICU, while trying to maintain some kind of normalcy for Emerson, getting paperwork for insurance and birth certificates and social security documents done...don't forget working sleep somewhere in that mix. We basically lived out of our car...driving. I often forgot I had just undergone a major surgery. I was the last thing to be worried about though. My recovery with Hud was completely different than with Emmy. I think my body knew it had to heal quickly so I could keep up. Soooo thank you, body..for that...

1 comment:

  1. You are the most awesome Mom. You have explained this perfectly and it is so heartfelt.