Hi Ladies. I hope everyone is doing fantastic this afternoon!
I just got home a little while ago from an early morning appointment at the Neonatal Development Clinic – otherwise known as the NDC. For those who aren’t quite sure what that is, it’s basically a specialist or team of specialists in the follow up and development of a preemie and their well being. They typically follow a baby for 36 months, or 3 years, after birth and or a NICU stay.
The specialists work with the parents and consult with or co-ordinate other specialists for follow up appointments for babies who need it, based on their condition. They ensure the baby is meeting all milestones based on their adjusted age – that is, the age they technically are by how may weeks gestation they are, as opposed to their ‘true’ age. It can be a bit confusing for those who have never dealt with the preemie realm before. Richi was born at 33+4 (33 weeks, 4 days) and has seen his NDC twice at this point. He goes every 6 months.
Okay, all of that explained, now to get to what was my morning.
I was expecting to go in there and hear nothing but good news, and be on my way in about 30 minutes since having seen her. That wasn’t the case.
Although she is very pleased with him developmentally – he is right on for a 6 month adjusted baby, and is even doing some things 8, 9 and 12 month babies do – she is concerned about a few things.
For one thing, I need to have an EEG done with a Neurologist because she wants to have him checked for a seizure disorder. When we were in there today, he was having what you would call tremors, where he appeared to be very shaky. I noticed this about a week ago and I thought it was just because he was really hungry. He couldn’t have been cold because I keep my house on a very comfortable temp setting. Regardless, he has been doing it off and on all week and she saw it today. That, coupled with the fact that he has had what I can only describe as spasms in his face 3 times over the past week, are prompting her to want him to be evaluated as soon as possible. Thank God I know the Neurologist we are going to see, because of a situation I dealt with in the past with Alex, my 12 year old – he was diagnosed with an Arachnoid Cyst by the same Neurologist – and he is a fantastic doctor so I have complete faith in him. We are hoping this is just a ‘thing’ and that it’s nothing, but it’s certainly more than I had expected to hear today.
Aside from that, we need to have him seen by Pediatric Gastroenterology because he hasn’t gained weight yet again for the past 3 weeks. He has been having a difficult time gaining and maintaining gained weight for the past two months now, and we aren’t quite sure why or whats going on. He breast feeds 4-6 times per day, sometimes more, and he has been eating 3 meals per day – all of which I add breast milk to. He, for about a month, was hating to latch on and come to find out he needed to be put back on his Zantac for his acid reflux, which never truly went away, and was (we think) affecting his ability and desire to nurse. Couple that with the fact that little man is teething (3 teeth at once!) and it’s a recipe for disaster. But, he has been back on his Zantac since September 26th and he still hasn’t gained anything from that last appointment. So, she wants to rule out any food allergies through means of testing with the Gastro, and they also have nutrition specialists they want me to see within that practice who can help me learn how to somehow introduce more calories into his diet and help him gain.
He has been eating much better since having gone back on the Zantac. When he was off the medicine, he would only breastfeed 3 times per day if I was lucky, and he would always pull off, scream, arch his back and was completely miserable most the day every day. It was so sad to see him that way, and I never really knew what was going on.
Okay, moving on.
She also wants him to see a pediatric retina specialist because when he was born and was in the NICU, he was on CPAP breathing assistance. Apparently, CPAP has been known to cause vision impairment in some babies, and so they want to do a thorough checkup to make sure everything is A-OK there. I pray it is!
And also, she wants him to be evaluated by an Occupational Therapist because she believes he may have a sensory disorder of some sort. He has, for a few months now, been extremely sensitive to sounds. The sound of running water, whether its a sink or shower, or a toilet flushing, or the dog barking, the vaccum or hair dryer on, or something as simple as a dish being put into the sink, make him scream. He hates loud noises more than that of an average baby. At nearly 8 months actual, 6 months corrected, he should most certainly be used to and accepting of these day to day sounds. So, we need to find out what’s really going on there. When I asked if this may be Autism related, she said it may or may not be, but that it’s really too early to tell. Preemies are at an increased risk for Autism, so I am preparing myself for the worst if it comes to that. I like to be ready for any and everything.
Did I miss anything? I’m trying to rack my brain, here…
I think I got it all. Oh, as for the figures!
Today, he was 15 lb 3 oz. He was the same weight at his last weight check on September 26th. She said his length is 26.5 inches, which is pretty tall for a little guy his age. His head circumference was 16.75 which is perfect, and his weight for height was the concerning part. On the preemie scale, weight for height, he is in the 5th percentile. We need to bring that up.
Needless to say, I’m overwhelmed and stressed today. I now have a migraine and need some serious coffee. I wish I could take a nap, but there’s way too much to do. My husband’s birthday is tomorrow, and I need to go and get him his gift, a card, and a cake and get that squared away today. I also have ample housework to get done. The baby is taking a much needed nap right now, and I am just sitting here like…Ugh. What a day.
I hope everyone has a fabulous day. I’m sure I will be back later tonight. Feel free to comment and ask questions if you like, I love hearing from you all and I love interacting.