Wednesday, July 11, 2012

The good with the bad...

That's how it always seems to go, at least for us. For every piece of bad news, there's almost immediately good news and vice versa. Sadly, Jeremy's grandfather passed away this morning. He had battled cancer multiple times and eventually had a stroke (just after Jensen had his). He was sent home on hospice and was kept comfortable for the last few days. Jeremy and I are sad that he never got to meet our little man :(

Jensen has been struggling for the past few days. He is teething and is pretty miserable. Although this is a totally normal baby thing to go through, I have been slightly panicky at the thought of what else could be going on. We brought it to the attention of Dr. Robinson at our appt on Monday, but yesterday Jensen was much worse. He refused to eat more than 10-20 mls at a time, and had very few wet diapers yesterday. Dehydration is becoming an issue and his refusing to eat is only made worse by his Lasix dose 3x daily. We called the cardio office and let them know. We were told to keep monitoring his ins and outs and weight and to take his Lasix down to 2x daily. 

Overnight he did a little better, but is still dehydrated. His sats have been great but his weight is down slightly. Now I know what you are thinking. Healthy babies go through phases where they won't eat, especially while teething. Yes yes, I'm fully aware. But my baby isn't a "normal" baby. He's a heart baby. Any one "normal" baby symptom could be a sign of something much worse. Although Jensen is much more stable now than ever before, it is hard for me to get out of the interstage mindset. And we all know Jensen is a bit on the rowdy side so I'm hesitant to ever call him "stable". 

For now, the solution for Jensen's dehydration is to put in an NG tube. Yuck. I'm absolutely, positively dreading this. He has done so well without the tube until now. I'm worried that he will revert back to his old habits of tube feeding then barely bottle-feeding because of the violent reflux. However, short of making a 1 1/2 hr trip to the children's hospital to poke him 20 times to start IV fluids, this is the only way. It should only be for a day or two and then we will get back to his normal feeding routine. Fingers crossed.

On the tails of this sad, frustrating news...I do have some good to share. Jensen has had a love-hate relationship with tummy time for some time now. He seemed to really love it at first then would scream approximately 5 seconds later. Today, I began really working on tummy time (since he has now been cleared by his doctors). I laid down the tummy time mat and put him on top of it while laying on his tummy time pillow. That must have been the optimal tummy time conditions, because he didn't even cry! Wow! Then, he actually lifted his head up and looked around! He has never been able to get his chin to clear the surface. That's the first time he has actually participated in tummy time festivities =) Neck strength is such a huge hurdle for him because of the large amount of time he has spent lying still on his back in the hospital. He also still has very tight muscles in his neck from the ECMO cannulas. He did only look to one side, but heck...I'll take what I can get. This is a monumental leap forward for him. This will help him catch up developmentally and hold his own head up for longer periods of time and work on sitting up. I'm beyond proud of him!

Super windy before a huge storm

Whoaaaa what's that wind??

My grown up baby

Jensen and Mommy...On the mean streets of Raeford.

Holding his head up!

Ok, maybe I got a little excited and took too many pictures!

"Seriously Mom, I'm a big boy, leave me alone" 
I'm so proud of him!

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