Testing is Not so Fun

As of Monday morning, Remy had to undergo some very uncomfortable testing.  My God!  As a new mother and father, it was just difficult to see our little girl go through what she did.   One of the NICU doctor’s approached us Monday morning to discuss her most recent blood test results.   They found what was thought to be, and later would turn out be a bacterial infection.  She explained, that they were immediately going to administer her two antibiotics, Vancomycin and Cephalexin, for precautionary measures, and proceeding that further testing would be done.

As a result of the results found, Remy would  need to forgo several uncomfortable tests.  More blood and urine tests would be need to be taken.  This involved the use of a catheter, which fortunately drew urine in one attempt, but Remy was certainly not happy about it.  The next test was a spinal tap.  That was scary.  Our, 2 lb., 13 day old girl was getting a spinal tap.  I was not allowed to observe this.  She had to be curtained off in a  sterile environment.

I try to be there for every procedure.  I’ll hold her hand, talk to her, and just do my best  to make sure that I know what she is going through.  I’m not sure that it helps, but I think that it does.  It’s not like I’m really thinking about much else these days, but I want that harsh, hands on reminder of what she is going through.  It is important that I’m there for those things, not just to understand the science of it, but more importantly, to understand (as much as possible) what my baby is going through.    I like to believe that I am comforting her through this, even if it’s just a little bit.  Eventually I want her to get the feeling that Daddy will always be by her side through good or bad, even if she has no idea who I am yet.  Let me just add,  I write these post from my perspective, but I cannot say enough about how great Mary has been.  It is something special to watch your wife instantly become maternal and bond with her daughter.  I’m so proud of her!

Getting back to what’s going on.  That was Monday.  Tuesday morning, when we arrived at the NICU, we got there early enough for rounds. We listened in on the reports.  As usual, we were welcomed into the circle, and although we cannot understand the clinical terms, they do their best to put everything in laymans terms for us.  Remy did well overnight.  Her vitals were fine.  Her white blood cell counts were still down, as they were on Monday, which is directly related to the bacterial infection. They would be keeping her on the same antibiotics and later in the day they would be sending in someone from neurology to ask questions.   Following that, an EEG would be set up for overnight monitoring.

I was going to be kangarooing with her today, so I was naturally excited.  After rounds, I was off to the dentist for two quick fillings.  I came back not being able to feel my mouth for 3 hours and took some relax time, kangarooing with Remy in my arms.   It was different from the previous two times.   She was twitching intensely and often.   It was disturbing.  I was scared!  I alerted the nurses and doctors, as both Mary and I have been doing since Monday.  The nurses, kept checking, and as I mentioned in my previous post, we were also told by other parents that their preemies went through the same thing.

A neurologist came by to check on her while I was kangarooing.  Of course Remy just had an intense series of twitches immediately before he arrived, and immediately after he left, but nothing while he was present.  How frustrating!  Have you ever been in a deep sleep, and all of a sudden, you wake up to a sudden jerk, as if you are falling off the bed?  That is what it is looks like when she twitches, except that it happens repeatedly, sometimes about 20 or 30 times in a row. You try to stop it, but you cannot.

Another neurologist arrived around 6:00 PM to set up the EEG.   Mary had to go pump, and I stayed with Remy.  The neurologist wiped Remy’s head down and began to attach several leeds to her head.  It was amazing how well Remy did during this.  She clinched onto my finger with her hand the entire time.  We did the left side of her head first and then turned her over to do the right side.  The smell from the glue was very strong. It had to of bothered her, as even I was having a tough time with it.   It took about 20 -30 minutes and the process was done.

Mary was back from pumping on the tail end of it attaching the leeds.  After that, I stepped out for a moment to the family room.  Mary and our nurse Jen cleaned her up changed her diaper and redressed her bed.  Jen has been teaching us the past few days how to do these things, and Mary has been all hands on (Jen also took our first family picture today which you can see below)!  Mary came into the family room afterward and told me that Remy was finally fed up.  She was swinging, punching and kicking as if trying to say,  that’s enough!

We had a rough day, but our day was nothing compared to Remy’s.  She was pretty beat!   After the action filled day she experienced, it was time for some well needed rest.  We thought about staying over night, but Remy was just going to be kept under a blanket and left to sleep for the evening.   We figured it was best to go home as usual, get some rest, and hope Remy was able to do the same.

After picking up Remy’s new stroller at Babies R Us, we arrived home about  9:00 pm.  I caught a rare glimpse of my Islander’s going into another habitual OT game  which they actually managed to win, while Mary took a hot shower.  We just wanted to sit and experience a moment of relaxation for a bit, but I’m not sure that is even possible right now. We watched some TV, ate on the couch, and went to bed .  The past two days were pretty tough.  Remy has really had to put up with some serious trauma. We are hoping for a better day tomorrow!

Below are some tough pics to look at it.  You’ll see Remy with her leeds on and under diress, but we hope you enjoy some of them put a smile on your face, like Mary  being a great Mom and cleaning Remy’s lips, our first Family photo together, and me holding my baby girl.

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8 thoughts on “Testing is Not so Fun

  1. I hope Remy’s days get easier and easier. Sending you all as much positivity as I possibly can! So happy you were able to hold her- I’m sure that was just as comforting to you as it was to her!

    • you are doing the right thing by continually being there so close to Remy during all this. I believe it makes a huge difference to her.

  2. Look at those shots with her eyes open!! And such a beautiful family photo. Just keep hanging in there – all of you. She most definitely knows that’s daddy and mommy holding on to her through all of this. And a year and a half from now when she’s saying mama and dada that sound will be music to your ears.

  3. Thank you for sharing your heart with us Remy Will grow to be a fighter.Make bo mistake she cab feel your love and strength. Everyday that passes make her stronger.You have so many people who have you in their prayers that God will surely bless you. Very shortly Things will be normal and you will be enjoying the life you dream about as a family. Until tben I will pray for you all.

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