Thursday, April 9, 2009

One year ago today, I got to hold my baby for the first time. I could only hold him for 10 minutes, but it was the best 10 minutes of my entire life. I will never forget those moments. They will stay with me for the rest of my life.

I am having a difficult time this year, trying not to relive what all we have went through. Last year at this time, Hunter was extremely critical. I wasn't sleeping. It was just a really bad time last year. They told us that it was going to be a long road, and boy - they were right! It has been a long road. Hunter has been such a strong boy and has conquered so many obstacles, jumped over so many hurdles, and still manages to keep a beautiful smile on his face. He is amazing. He is an amazing little boy to know. He brightens up a room, just by his presence. When I think back to all that we have been through - the details are frightening. And, the only way I can explain how we got through it was by the Grace of God and Prayers. Our battle has been very much worth it, because we have Hunter. The scary part is that our road is not over. Hunter is still dealing with feeding problems. The "G" tube will be placed shortly. Our consultation with the pediatric surgeons is next week. This has been very frustrating. It isn't about sticking a bottle in his mouth and making him eat. It is not that easy. All the different signs to look for during his feeding time. You have to make sure that when he denies the bottle, you don't force it. If you force it, it could create more of an oral aversion. I have to mix rice cereal with the formula to make it a thicker consistency. This is because his swallowing muscles aren't fully developed. Aspiration is always a concern. A feeding tube is another story in itself. We have to make sure that the feeding tube is correctly measured, inserted into his stomach correctly, or the food could aspirate into his lungs - causing a major set back for Hunter. We also have to mix baby food with rice cereal to give Hunter the extra calories to grow.

Hunter is doing well without oxygen during the day (wake) hours. Although, he still needs oxygen at night or nap (sleep) hours. His oxygen saturation must stay above 93% during the day or night. During the day, he has no problems. At night, he drops to 90-91%. It is border line; but I'm not taking chances. A low oxygen saturation could make his Pulmonary Hypertension return. That is a serious heart condition that scares me.

Hunter went in today for an MRI. They ordered an MRI because of the seizures he had in January. They wanted to take a closer look at his brain bleeds back in the first. This was an event that I wasn't expecting. They treated it as if it was a surgery. The anesthesiologist was there, they put him under, stuck a vent down him, and did the MRI. They had to do this to keep him perfectly still during the procedure. Afterwards, he was sent to recovery. He was monitored to make sure he woke up, had no reactions to the anesthesia, and was able to hold food in his belly. He did fine. We were at the hospital all day though. We haven't received the results back yet.