Monday, January 27, 2014

God Tests

I decided I needed a blog to help me process the news Ray and I have received over the last few weeks. We are pregnant and beyond ecstatic about baby number two and Dylan being a big brother! They'll be 19 months apart.

Just a week ago, Ray and I were going in for my Level 2 ultrasound - the one where you find out the sex of the baby - we were so excited!! I had a routine appointment that morning when they informed me that I was actually 18wks 5d pregnant and not 19wks 6d pregnant like I originally thought. I asked if it would affect the ultrasound later that afternoon. The nurse practitioner assured me they would let me know if they needed to reschedule. We listened to the baby's heartbeat and I was on my way.

At 1:15p, Ray, Dylan, and I left for the hospital! We really wanted Dylan to be there even though he had no idea what was going on. When we were called to the back, the ultrasound technician was making small talk and told us she'd reveal the sex at the very end. Halfway through, she told us we were having a boy!


I was so excited; it's what I've been wanting since I found out I was pregnant. About five minutes after the big reveal, the tech told us she couldn't get a good read on his heart because of his position. She went to go get another "more experienced" tech who, after making an attempt, ended up getting a third tech to look at the heart. While Ray and I were waiting for the third tech to come in, we looked at each other and wondered whether there was something more serious going on. The third tech also couldn't get a good read. She got the doctor.

The doctor told us that based on the ultrasound, it looks as if our sweet little baby has a congenital heart defect called Tetralogy of Fallot with truncus arteriosus. Our world was spinning. What was TOF? Is it treatable? What does truncus arteriosus mean? I, of course, started crying. Ray held it together. The doctor called the pediatric cardiologist. About 30 minutes later I was laying down again while the cardiologist and his assistant were conducting a cardiogram of his little heart. By the end of it he confirmed the diagnosis of Tetralogy of Fallot, but he said the subset was pulmonary atresia, ventricular septal defect, and MAPCAs.

I'm not an expert but from what he told us, I gathered that our tiny baby's pulmonary valve didn't develop (pulmonary atresia). Oxygenated blood is unable to pass from the heart to the lungs so many collateral arteries have formed to supply blood to the lungs (MAPCAs). Also, his heart has a hole in it (ventricular septal defect).

As if things couldn't get any worse, the genetic specialist came in and told us that TOF is common in babies who are diagnosed with DiGeorge syndrome (a chromosomal abnormality). We declined an amniocentesis test and opted for my blood to be drawn to detect for indicators of DiGeorge syndrome or other chromosomal abnormalities.

After a week of crying, praying, accepting the diagnosis, and more praying, we got the results back from my blood work. There are markers which suggest our baby has DiGeorge syndrome. Another blow...

Of course I'm devastated about the news but the thing that saddens me the most is the idea that, depending on how severe the TOF is or how severe the DiGeorge syndrome is, our sweet baby might  not make it through his first year of life. If he does survive, then he might have to live in the hospital for the first few days/weeks/months? of his life recovering from surgeries...

When I gave birth to Dylan, Ray or I were with him every moment for the first three months of his life; we responded to every single cry, whimper, etc. To this day, and Dylan is 14 months old, we still tend to Dylan in the middle of the night and comfort him while he drifts back to sleep. I'm heart broken that my new baby will have to be hooked up to various tubes and monitors. I'm heart broken that I won't be able to hold him whenever I want. I'm heart broken that my new baby might have to be without us, even for a minute. I want more than anything for him to know that he is loved. The only way I know how to convey that to a newborn is to hold him and respond to his every need.

I pray for strength every day. I still pray for a miracle even though the odds are stacked against us. I pray for acceptance and peace of mind. I don't know how mommies with special needs children do it. I hope I can be the best mommy to my sweet son no matter what form he takes or what he has to go through. I'm still in shock because I already love him so much... I can't help but think that he's anything other than perfect.

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