The Improvements Keep Coming

Elijah is doing so incredibly well! Every day is such an inspiration and joy. Our little guy is being healed and we couldn’t be happier. This morning we were called at 8:30 am because Elijah had woken up. I rushed upstairs so that we could try breastfeeding. And we did it! It was a different nurse today who also happened to be a lactation consultant and she gave me some more tips which were helpful. He nursed for about 15-20 minutes and so that means he wasn’t given his meal via the tube. Now we just need him to do that every time for 24 hours and we can go home. That may sound easy, but unfortunately we’re still contending with that extreme sleepiness. He seems to wake up every six hours and then stays awake for two hours. I’m hoping that we can figure out his pattern so that we can get on his schedule and I can feed him when he is hungry and not when his scheduled feedings are. It’s so unnatural. Nothing about his life so far has been natural and that is so frustrating to me. I know that we’ll get there; I just need to be patient. Again, everyone seems impressed by his fast progress and I’m hopeful that a homecoming is in the near future. They seem to be trying to prepare us for it, so that’s good.

We were also able to nurse a second time today. So there were two times today that he didn’t get his feeding through the tube. This is really encouraging because I feel like we’re on the right track. The lactation consultant and the occupational therapist keep saying, “Well, as he keeps getting better…” He will only continue to improve.

The occupational therapist came again today and that went really well. Her name is Terry and she is just wonderful. You can tell she loves what she is doing and she is so sweet and gentle with Elijah. She tested all of the reflexes that babies have when they are born. He doesn’t have strong reflexes yet, but he is developing them. Before he was so limp, but as each day passes, he gets stronger and his reflexes improve. She showed us some things we can do to develop his reflexes and make him stronger too. It’s great to know he is doing so well and that there are things we can do to help him. It makes us feel useful. She also gave him hand rolls for when he is sleeping. He has a tendency to hold his thumbs in and this should help his joints from tightening up.

Elijah has been grasping at us a lot more which is really exciting. He was grabbing at Andy’s face and he reaches for me and has gotten a hold of my hair. He seems to be developing well. He likes to watch his mobile and look at our faces. He watches people and turns to look at people when they are talking. We’re doing our best to stimulate that little brain of his.

We left around 7:30 tonight, which is really early for us. We’re pretty exhausted and we need our rest. We tried to wake him up for his 6:00 feeding so that I could feed him before we went home. He had only been sleeping for an hour, so we were pretty doubtful that we would wake him up. He just fluttered his eyes a bit, but didn’t get into an alert awake state. He was simply too tired to eat. Andy held Elijah while I pumped and the little guy started to cry after awhile. Our bugging him did stir him. I took it as a really good sign that he is adjusting to the Phenobarbital and that he’ll keep waking up more. And the more he wakes up, the better he’ll be able to feed. It’s great because it feels like the nurses are really working with us to get us to go home. They pretty much let us do whatever we want. He is our son after all and they see that we’re there all of the time and that we’re working really hard to get him home. They take notes on everything. It really freaked me out one time when I told a nurse that my back was really hurting and the next day a different nurse mentioned something I could do for a sore back. They’re paying attention which is a good thing. The sad thing is that I don’t think that they see a lot of parents like us who are so involved in their children’s care.

Please continue your prayers. This has been the hardest thing we’ve ever had to do, but the future is bright and we know that God is caring for us and Elijah. Pray that he will continue to maintain his temp, feed better each day and wake up more. Pray that we’ll be going home soon. Happy Sabbath!

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