I was put under general anesthesia when I had Maksim, and the first thing I remember when I woke up, was my obstetrician and the neonatologist telling Logan and me a bunch of numbers and statistics regarding survival rate and quality of life for babies born this early. Terminology was used like PDAs, brain bleeds, echocardiograms, head ultrasounds, retinopathy of prematurity, cerebral palsy, and necrotizing enterocolitis. Thankfully, my foggy brain was able to understand most of what was being said due to my nursing knowledge, but there were still a lot of scary unknowns and outcomes that required time to just wait and see how Maksim would be affected.
Maksim had so many tests run while in the NICU, three of which were head ultrasounds that we agonizingly waited for the results of. As Maksim's mom, I think these were the tests I stressed over the most. A PDA can be fixed with surgery, and NEC can ultimately resolve with intervention and cause no lasting effects. But brain bleeds. Brain bleeds are scary and bring along with them results such as cerebral palsy and other mental and physical deficits.
I remember the feeling I had when Maksim's last head ultrasound came back with clear results indicating no brain bleeds. There was a lot of relief knowing he had made it past that hurdle. Unfortunately, brain bleeds are not the only cause of cerebral palsy, and even without them, the micro preemie population remains at high risk for this disorder. Therefore, for a NICU mom, those scary words tend to annoyingly resonate in the brain when physical, mental, and social milestones are delayed.
I have watched Maksim progress and meet many milestones in the last year, but I have also seen delays that have continued to concern me. CP has come into my mind many times, particularly the past couple of months, and my fears were validated last week when Maksim's therapist mentioned it and suggested an evaluation by a neurologist.
As one might imagine, I have spent the last week tirelessly researching cerebral palsy. I have done way too much reading and video watching in an effort to come to my own conclusion on whether or not I think he has it. I have compared and contrasted and planned and prepared. I have researched medical equipment and therapy programs for children with cp. I have watched videos of kids with cp and videos of kids without it. One minute I am convinced he has it, and the next I am convinced he is just delayed and needs more time. In short, I have driven myself crazy in an effort to know, and plan for, the future.
We were able to schedule an appointment with a pediatric neurologist in Salt Lake, but it will not be until March 19th, which definitely seems like light years away. In the meantime, I pray I can live in the moment and enjoy my beautiful son without worrying about the future.
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Sunday, February 23, 2014
Appointments
Maksim has had a couple of appointments lately, and I figured I should probably hurry and blog about how they went before I forget. The first was a pulmonology appointment in Boise with Dr. Tippets. We had a long drive with both kids on Super Bowl Sunday, but we were lucky enough to get to stay at my sister's house and even watch the game with them.
Maksim's lungs have been doing pretty well since his hospitalization in December, so we weren't really sure what to expect from the appointment. They didn't run any tests or do any new X-rays, but the doctor did a thorough assessment, asked us a bazillion questions, then gave us something I have wanted since the first time Maks ended up in the ER in respiratory distress, an action plan to follow at home. Seriously, I am so excited about this. Now, at the first sign of illness, we have medications we can give him to hopefully prevent hospitalization. We haven't had to use them yet, but it is nice to know we have them when we need them! Dr. Tippets goes to Twin Falls every couple of months. We shouldn't have to follow up with him on a regular basis, unless Maksim gets sick a lot, but it is nice to know there is a closer option than Boise.
His second appointment was the next week in Salt Lake at the Moran Eye center at Primary Children's. This was just a follow up appointment from his first one in October, and in my opinion, it was kind of a waste of time. I only say that because we drove there on Sunday with both kids and had to pack up our whole house to stay one night, then we woke up the next morning, went to the appointment (which lasted 5 minutes), then packed up our room and headed home. I really liked Dr. Dries the first time we saw him, but this time he was extremely rushed, and he said everything looked good prior to even looking at his eyes. He was also not very good about addressing our concerns, but I guess no news is good news, and we don't have to go back for another 6 months.
The best part of the Utah trip was the blessing we had of staying at the Ronald McDonald house! If anyone is feeling an itch for service or donations, I highly recommend looking into this. What a great thing this is for families. We always worry about staying at germy hotels, because Maksim gets so sick from even little illnesses, but he RMH does not let anyone stay there who is sick, so we felt a little better about taking him there, They also had a nice toy room that Milyn could play in, which helped a to a ton after the long drive, and they provided a meal for us on Sunday night. We were very humbled by the kindness shown to us while we were there!
- Posted using BlogPress from my iPad
Maksim's lungs have been doing pretty well since his hospitalization in December, so we weren't really sure what to expect from the appointment. They didn't run any tests or do any new X-rays, but the doctor did a thorough assessment, asked us a bazillion questions, then gave us something I have wanted since the first time Maks ended up in the ER in respiratory distress, an action plan to follow at home. Seriously, I am so excited about this. Now, at the first sign of illness, we have medications we can give him to hopefully prevent hospitalization. We haven't had to use them yet, but it is nice to know we have them when we need them! Dr. Tippets goes to Twin Falls every couple of months. We shouldn't have to follow up with him on a regular basis, unless Maksim gets sick a lot, but it is nice to know there is a closer option than Boise.
His second appointment was the next week in Salt Lake at the Moran Eye center at Primary Children's. This was just a follow up appointment from his first one in October, and in my opinion, it was kind of a waste of time. I only say that because we drove there on Sunday with both kids and had to pack up our whole house to stay one night, then we woke up the next morning, went to the appointment (which lasted 5 minutes), then packed up our room and headed home. I really liked Dr. Dries the first time we saw him, but this time he was extremely rushed, and he said everything looked good prior to even looking at his eyes. He was also not very good about addressing our concerns, but I guess no news is good news, and we don't have to go back for another 6 months.
The best part of the Utah trip was the blessing we had of staying at the Ronald McDonald house! If anyone is feeling an itch for service or donations, I highly recommend looking into this. What a great thing this is for families. We always worry about staying at germy hotels, because Maksim gets so sick from even little illnesses, but he RMH does not let anyone stay there who is sick, so we felt a little better about taking him there, They also had a nice toy room that Milyn could play in, which helped a to a ton after the long drive, and they provided a meal for us on Sunday night. We were very humbled by the kindness shown to us while we were there!
- Posted using BlogPress from my iPad
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