Update on our boys…

So much has happened in the last few days, I don’t even know where to start.  First, our twins have names. Baby A is Parker and B is Zachary. 

I have been discharged from the hospital and now we will begin the daily commute back and fourth until they come home. 

However, not all is good.

In the wee hours of the morning on the 26th, Parker suffered a pulmonary hemorrhage.  This kind of event is catastrophic to anyone, let alone a teeny 27 week baby.  He had very little oxygen and his heart was not working very well.  They gave him lots of medication, a blood transfusion, and many, many other things.  We were told that he wouldn’t make it another 2 hours.  Our sweet baby boy was dieing.  I have never felt so much heartache in my life.

We were able to hold him, and a photographer came to take pictures of him and Zachary.  We held him for nearly 8 hours, we didn’t want to move him as he was stable and not in pain. 

Once it was time to put him back into his bed, the doctors wanted us to go back to our room and talk about decisions that we would have to make.  Do we take him off the breathing machine and let him go?  Do we do nothing and see how long he lasts?  Do we continue care and try and bring him back if he goes?  It’s so much to think about, and way too much to think about at the same time.  We went to our room and cried. A lot. 

As it stood when we left, Parker could (will) have some major developmental delays.  He was without oxygen and his acid levels were very high for way too long.  Will he ever be able to walk, talk, think?  What kind of life would he have?  Neither Laurie or I want Parker to suffer or have a life that he will not be able to even open his eyes.  We went back with a decision, if his test results came back that he has multi system failure then we knew that it was time to let him go.  However, that was not the case. When we went back in the NICU after a few hours of rest, talk and a meal, Parker has improved slightly.

Before we spent hours holding him, he had NEC, which this early is not good at all, and is a sign that there are other problems.  However, when we went back, somehow it has sealed itself up and there was no air or hole in the bowel or abdominal wall.  His heart was working strong, his kidneys were making urine, and he was stable.  They assume that being that other systems are starting to recover from the event that his brain has started to recover too.  If nothing else happens, the damage has already been done.  And, we wont know how much or how little until he gets older and shows us.

So, as of now, Parker is a very sick little boy.  We did not have to make a decision to take him off the breathing machine yesterday, but it is possible that today, tomorrow or a week from now that time could come.  If he faces any major complications from here on out it could take his life. 

Please send Parker all the good vibes and love you can send.  He needs it. He really needs it.

Zachary on the other hand is doing well.  He is hanging out under the bili lights with his sunglasses on.  When he gets stressed out and I put my hands on him, he calms down immediately.  Mama’s boy he is, and I love it. 

Those of you who we are connected through Face book, please do not post anything on my page.  I’m not ready for the world to know that Parker may not make it….

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10 thoughts on “Update on our boys…

  1. I am so sorry. I lost an IVF twin boy to SIDS in April, and we had to make the decision to take him off the ventilator when there was no hope of recovery. It was so difficult. My thoughts are with you.

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