Worry Wart

Last night at about 2:00 was trying to will myself to sleep. I was so tired but for some reason I could not fall asleep. Declan began his feed at midnight - 20 minutes or so of attempted oral feed followed by 90 cc's of tube feed - which means he finished at about 1:30.  About 30 minutes had passed since Declan finished with his tube feed and I still couldn't' sleep.  My mind was trying to process a million thoughts and questions. 

I was thinking about his oxygen saturation numbers About a week ago, they began to dip into the high 70's, which is low for him. We tried new monitoring strips in the hope that was the problem. When the numbers continued to be low, we set off for Yale - not knowing whether or not he would be admitted to the hospital again. We packed our bags just in case. Declan was subjected to a number of tests. An echocardiogram, an EKG, and xray - but they revealed nothing. His blood panel came back fine as well. The doctors also made some fluid adjustments with the amount he feeds and formula concentration. We returned home only to find over the next few days that the sat numbers returned closer to his normal - around 84 or so. So maybe it was the fluids. . .

I am also very concerned about his oral feeding. Although he used to eat about 1/2 ounce by bottle back when he was in the hospital, now he rarely takes anything. They say they are not too worried - but I am. Both for his future ability to eat and our sanity. If he took something by bottle, we wouldn't be spending an hour and half of every "3 hour feeding block" for feeding. I was trying to calculate and we probably spend about 10 to 11 hours of every 24 hour period feeding him - either preparing, attempting oral feeding, or tube feeding. It would be nice if he took some by bottle. We do have some scheduled feeding therapist visits coming up soon. I hope they can help!

Tammy took Declan in yesterday for some scheduled visits and I was thinking about that as well. He returned home with an EKG attached to his hip that he is required to wear for 24 hours. They are gathering data so see how his SVT is doing We won't get those results back for a few days. His visit did reveal some concern by the doctors about his weight gain. Apparently he is gaining TOO much for his calorie consumption. Yes, sounds odd, I know. They say normally, with the amount of calories he is taking, (due to throw ups and low volume of formula) most HLHS babies would be hospitalized for lack of weight gain. But he has actually being gaining well. On one hand that is good because he is gaining weight, but on the other hand it could potentially mean something like thyroid issues - so of course they took more of his blood to test for that. Declan's visit also included a EEG monitor for seizure activity. Since I began writing this we received the results and unfortunately there doesn't seem to be much change from his initial diagnosis. His brain waves are still a bit abnormal indicating the potential for seizures (but he is on the medication to prevent them). So most likely his spots in his brain haven't healed. That was a bit disheartening - we were hoping that at least one thing might be "crossed off the list".

On a positive note, he has definitely been practicing his smile. When Declan flashes his cute little smile it warms my heart.  He tends to smile most as he lays down and you put your face close to his face and excitedly talk to him. It's that smile that creases one side of his lips and spreads to his whole mouth - I love it.

Thanks you all again for your love and prayers! We appreciate all the help in its various forms we receive. We couldn't do it without you all!