Sorry that I was in such a raw state emotionally last time I posted. This is a hard road to travel – having a newborn who is “sick”, constantly waiting for the other shoe (in our case, shoes!) to drop. When I started this blog I committed to be open and honest with my emotions – good and bad. Life isn’t always rainbows and unicorns and I can’t pretend that I’m always perfectly ok with what has been blessed upon us. Please understand that I passionately love my children and when I speak of life being unfair it is not me I am sad for – it is them. I can handle anything. As a mother I just want to shield them from any unhappiness and pain that I can.
Eli did not respond to the initial Lasix dose of 0.2cc’s twice a day so now it’s been upped to 0.4cc’s twice a day. I really pray this helps him. He’s still eating like a champ but his breathing is labored. That is really the only sign that he’s in heart failure currently. Hopefully this increased dosage will help and it will buy us more time. We really want him to be bigger before handing him over for surgery. He doesn’t necessarily need to be but I’d definitely feel a little better if he was. So, our job continues to be to fatten our little guy up! Cody happily participated in feeding him last night.
We received a referral from Eli’s pediatrician for an ENT (Ear, Nose, Throat dr.) so we’re waiting for them to call us back to schedule an appointment. I’d really like him to be seen by them before having his follow up hearing test. He’s a very snuffly boy so I’m convinced that part of his hearing issue could be contributed to his stuffiness. They told us in the NICU to not suction his nose unless absolutely necessary because it could cause damage to his very small nasal passage and nostrils. The night he failed his hearing test he sneezed and we had to suction him. He seemed to be much more aware and alert after that! Sounds far fetched but both Chuck and I noticed it. He was definitely not our same “Snuffleupagus” after getting some of that yuckiness out, that’s for sure! He seemed to actually feel better. Today, unfortunately, the stuffiness is back.
We also have an appointment scheduled for his Early Intervention evaluation. Early Intervention (EI) is a program provided by each state in the country. They offer therapy services (physical therapy, occupational therapy, and speech therapy) based on the needs of the individual child. This service is available to any child that they evaluate and deem that it is necessary. Usually, Down syndrome is an automatic “in”. Once they evaluate Eli they’ll decide what services he needs and how often. Then the therapists will come to our house for each appointment. It was very important to Chuck and I to find an in home therapy program as we feel it will be more beneficial for Eli and our family to use the tools we already have in our home. Plus, they can include Cody in the therapy process. Who better to teach Eli than his proud big brother?
Chuck and I were just talking about the fact that our 3 week old baby (today – Happy Birthday Eli!) has more doctors in his short little life than the other three of us have combined. Crazy! Our job as his parents is to make sure he is always in the care of the best doctors. That takes a lot of work and research but our boy is most definitely worth it! I’ve heard that the first year with a child born with Down syndrome is the hardest as far as doctor visits, specialists check ups, etc. I’d say so far this is very true. In his short time at home (2 weeks) we’ve already been to 7(!!!) doctor appointments. Wow. And we’re adding in two more specialists. At least we’ve got lots of eyes keeping watch over our boy! We just want him to have the very best start at life. We want him to have the best so he can be the best.