Xavier - Two Week Update

My son is two weeks old today. After a crazy first week, where he underwent phototherapy for jaundice, treatment for a heart murmur, and caffeine therapy for apnea, we had a pretty positive second week. His jaundice bout seemed over, his heart murmur was no longer, he didn't have any more apnea spells, he was increasing his feedings and gaining weight - to a whopping grand total of 3 pounds, 8 ounces!

Justin, Lissie, and I visit Xavier at least once a day - usually in the mornings to correlate with his 11 am feeding and Lissie's prime awake time. During our visits, we are able to hold him for about twenty minutes, take his temperature, change his diaper, and help with his tube feedings. It is the highlight of my day to be with my family of four, even if only for a brief period.

Today, though, we arrived at the hospital and noticed that the bili lights were back. The doctor came and informed us that Xavier's jaundice levels have increased quite a bit and that they wanted to put him back on phototherapy. She said that it was most likely related to breast milk - and that they may take him off of it for a day to see if it was something in the milk that was causing his bilirubin levels to increase. But she also said that she wanted to do bloodwork to rule out any other possibilities. He also had five apnea spells yesterday, to top everything off.

Naturally I felt like crying. One, because after a week of progress, I felt we were taking a million steps back. Two, because I was already having issues with my milk supply and to add the possibility that there might be something "wrong" with the milk, did not make me feel very good. And three, because of the light therapy and the fact that he had a slight temperature, I wasn't able to hold Xavier in my arms when all I wanted to do was give him a big hug and reassure him that he was going to be okay.

This afternoon, while Lissie was napping and after Justin had left for work, I received a scary phone call. I immediately knew it was the hospital, and I answered it with much trepidation. It was the doctor. I knew that this was not going to be good news.

Apparently, Xavier's bili levels were still high, even though they had dropped two points. They were able to rule out breast milk jaundice, but they felt that he may have some sort of viral infection. And then she started speaking in medical terms, and all I heard was "red blood cells" and "is going to need a blood transfusion." Immediately, the tears silently started streaming. I tried my best to stay upbeat, and the doctor was very kind and said that all of these issues are very common in premature babies, and that even though the term "blood transfusion" sounds scary, he was really only receiving one tablespoon of blood (which to me wasn't really reassuring since my baby boy is a tiny guy to begin with). She said that, with my verbal permission, she would go ahead and get started on the transfusion and hopefully by the time we visit tomorrow, she'll have more answers.

When I got off the phone with her, I just started bawling. Not knowing medical anything, I immediately called Justin who called the hospital so he could translate the diagnosis to me in terms I could understand. Of course, I also cried to my mother. Thankfully, Justin talked to the nurse and was able to reassure me that this was, indeed, a common thing in preemies, and that our baby was under the best possible care. My mom, too, reminded me of the power of prayer, and she told me that she would visit my baby since she knew that I wouldn't be able to get down there any more today.

This is, without a doubt, the hardest test of faith that I've ever had. I try so hard to remain upbeat and positive about everything and know that all I can do is trust in God's plan for us, but sometimes all I can do is cry. It doesn't help much that my hormones are still crazy out of whack so the desire to start crying is with me at weird, random moments. I can't even look at a pregnant woman's belly without feeling sadness, anger, and hurt. But at the same time, I'm terrified of going through this again, and the thought of ever being pregnant again makes me feel nauseous.

I feel like I've let Xavier down. I wasn't able to keep him safe in my womb myself, and now he's struggling. I feel like I'm letting Lissie down because even when I'm not at the hospital, I'm constantly wondering how Xavier is doing...on top of not being able to carry her due to doctor's orders. I feel like I've let Justin down because this wasn't our plan at all. And all of it is very overwhelming, even though, I know deep down that my feelings are irrational.

But, as my mom said, all I can do is hope and pray for the best and understand that there is a reason for everything we go through in life.

I'm sure that Xavier would appreciate any spare thoughts and prayers, so if you've got any, please send 'em on over.

Here's hoping for a better tomorrow and more progress instead of setbacks so we can take a healthy baby home soon and fully begin life as a family of four!