Eli's first night home was anything but relaxing. He fussed a lot last night and I don't think any of us got much sleep. Eli is getting really strong which is fantastic but it's trouble too. He can move his head enough to wiggle out of his BiPAP mask if he wants to and when he is worked up there's no way you're going to put the mask on and keep it there.
The transition home has been a little rough since we didn't get a lot of sleep last night but we're still very happy to have Eli home. We missed out on the sleepless nights that come with the first several months of parenthood because Eli was in the NICU and we could hop up to the sleeper room to catch 6 or 7 hours of uninterrupted rest when we needed to. Now that we're caring for Eli at home we have to do all the things the nurses were doing in the hospital. It makes for a very busy evening especially when you're tired and trying to get a little sleep. I suppose the NICU spoiled us a little so it's time to take our lumps. It's not that I'm complaining. We knew the price we'd pay in terms of sleep when Eli was born and we paid it in full with Ian and Obie but somehow we forgot what it would be like. I remember feeling that way when Obie was born and I remember thinking back then, "I'm getting too old for this." Fast forward 2 years and we have another little one demanding our attention in the middle of the night and now I'm thinking, "I'm REALLY too old for this!" On a normal night we probably get between 7 and 8 hours of sleep and I probably drink 16 oz. of coffee in the morning before I start to feel "normal". If I push the limit I can survive on 5 hours of sleep but I'll need about 32 oz. of very strong coffee in the morning before I'm capable of opening a spreadsheet. (That's a little accounting humor for you)
We're hoping for a smoother night tonight but we'll survive. Tomorrow Eli goes in to see Dr. Shlafer, our pediatrician, and on Thursday he will go back to Seattle Children's for the pulmonary clinic. We will probably have weekly pulmonary clinics for the foreseeable future and fairly regular pediatric visits. We plan on taking Eli to another neurologist for a second opinion but I don't think there's any rush right now. Dr. Shlafer has recommended someone in Bellevue and we'll discuss it with him during Eli's appointment tomorrow. It will be nice to have someone review the neurological tests and findings and see if there's anything else we should consider doing to find a diagnosis. It's still frustrating that we don't have a final answer but we'll live with it as long as Eli is home and getting stronger every day.
Subscribe to:
Post Comments (Atom)
Your title is so perfect. It is crazy hard work! But so glad you're home.
ReplyDeleteHey, will you make sure to mention the neurologist's name that you get when/if you get it? Pediatric neurologists are very hard to come by and believe it or not (they leave often), my brain tumor child doesn't currently have one. So, we're looking.
Thanks, and keep up the great work. Give Patricia my best. Looking forward to the day I can come visit Eli at home.
Cord, We're so happy to see Eli home finally! No doubt, it'll be challenging, but so much better to be together. I'm with you on the caffeine, I think God made it for new parents! I wonder if you can get a personal care attendant in the house for Eli (PCA)? It's worth researching. You'd get one here paid by the state. That would help a ton. We're praying for you all, stay strong! Bless you, Joan
ReplyDelete