Taken on the cell phone after confiscation of the red marker:
T Update (another) September 22, 2010
First, I want to say thank you to everyone who has written and expressed concern for Little Miss T. We feel so fortunate having family and friends who care so much. It really means a lot to us.
We went for the ultrasound and it was a challenge to get it done, to say the least. Poor T was rather upset and who can really blame her. During the scan, all she saw was a strange man with some cold, goopy gel standing over her while he waved some wand thing all around her head. T of course wanted her mama to hold her during the scan, but it was best to have her lay flat. So, Daddy-O held her body while I held her arms and we sang, made googly faces, whatever we could do to get her to lay still. We ended up having to take several breaks to resettle T because she wasn’t going to stop crying until Mama picked her up.
Eventually, the tech was able to get the images he needed and Daddy-O and I left the office with a bad feeling about how things went.
Later that day, the pediatrician’s office called with the report and gave us the news that T does have extra fluid around the brain. It’s benign but there is an enlarged space and he wants us to see a pediatric neurologist at Children’s Hospital. I don’t really know what it all means… obviously, benign is a good thing but having extra fluid around the brain isn’t. Why is there extra fluid? Why isn’t it draining? How much extra is there? How big will her head grow? Does she need a medical procedure? These are all questions which are unanswered.
So, we’re waiting to see the specialist and we’ll go from there. In the meantime, T’s head continues to grow and we’re starting to notice that it’s a bit large. It doesn’t look overwhelmingly large but there’s no denying she does have a big head- she needs some hair! But she’s happy, in fact, the past few days, she’s been so unbelievably happy. She’s just a little darling and amazes us every day. She’s so close to crawling, she’s chatting more, she’s just so happy.
Well, if you read all that, thank you. I guess the short of it all is that there is extra fluid and an enlarged space between the brain and skull, but it’s benign, and we have a bunch of unanswered questions. Considering everything we went through with T’s birth, Daddy-O and I are pretty calm about the whole thing. I think if T had been a full term baby and this was the first major medical issue she had, we’d be flipping out right now. Instead, we’re collected and trying not to worry too much. Hopefully all will turn out well in the end.
Again, thank you to everyone and we’ll keep you updated. I promise I’ll respond to your emails soon.
Baby Yoga September 21, 2010
She can touch her toes, yay! T’s high muscle tone prevents her from having the flexibility that most full term babies have, therefore, something simple like reaching for your toes, can be quite difficult for a preemie. Every day, we do exercises to increase the flexibility and loosen up her stiff muscles. So, here we are 8.5 months and we finally have a toe grab, yay!
And, we actually did try a Mommy and Me Yoga class but that was a big FAIL. T is going through some separation anxiety right now so that made it quite difficult for me to do any type of yoga or to help her with some baby yoga moves. She only wanted me to hold her and nurse the entire class. What can I say, she loves her mama! I think we’ll give it more time before we try again.
T Update September 17, 2010
We met with our pediatrician this week and he was a bit concerned about T’s head growth, too. He ordered an MRI but of course insurance denied that so now we’re waiting for an ultrasound to be scheduled and we’ll go from there. Hopefully it’s nothing and everything is okay. I’m glad we’re getting it checked out- I’d rather have peace of mind knowing she’s okay and healthy.
I’m trying to remain calm and not worry too much. Overall, T has been so happy but she has been doing a few things lately that make wonder if it’s all related to the large head condition. I’m sure I’m just over-analyzing EVERY. LITTLE. THING. but that’s my nature, I’m a bit of a worrier.
In other news, I had my first go at being a single mom this week. Hubs has been away on a business trip so it’s been me and T and of course my parents are here to help which is great! We’ve been having fun but we’re looking forward to Daddy-O returning tomorrow.
This weekend, we’re heading back to the NICU where T was born for a NICU reunion party. This unit has been saving babies’ lives for 20 years and so they’re having a celebration to honor all the babies cared for by the NICU. Daddy-O will miss the event but I’ll be taking pictures. Maybe T will be able to see some of her “friends” from her stay.
Sunday we’re off to LA to visit with family. I feel like life has been pretty busy these days but in a good way- we’re having fun, enjoying the little moments and taking it all in.
Well, happy weekend to all!
Bang, Bang, Bang September 15, 2010
In my previous post, I mentioned that one of the things the NICU’s occupational therapist wanted T to work on was her inability to bang objects together or on a table.
Well, wouldn’t you know it, today T started to do it! It’s like it just clicked and now she loves banging around her toys and I LOVE watching her do it. It’s so funny to see T realize her new talent as she moves her toys up and down, faster and faster, hitting her table each time. She’s so happy perfecting her new trick.
I was a bit shocked, as was she, when it happened as T does have muscle tone issues. The high muscle tone makes her really stiff and so that she can’t really raise up her arms. So, when T grabbed her rattle and started banging it up and down on her table we were both quite surprised.
She did it! She did it! Yay T, way to go! Most parents dread the constant banging, but I say, bring it on!
The Good, the Bad and the Very Bad September 8, 2010
Our NICU developmental appointment went okay. Surprisingly, I was able to keep myself together and not lose it when I stepped back in to the NICU. I can get a bit choked up when thinking about T’s NICU time so I was kind of preparing myself for fighting back the tears when I returned to the hospital. Luckily, it wasn’t that bad.
After filling out some paperwork and getting T weighed and measured, it was time for the evaluation. T’s NICU occupational therapist was there and performed various interactions to test her skill level. For the most part, T was doing everything she should be for 6 months adjusted. In fact, she was even doing some tasks based on her actual age. The doctors & OT were pretty impressed.
For six months they wanted to see:
- Her safety reflex- puts her hands out to protect her body if she falls forward
- Puts weight on feet when held standing up
- Sits by herself
- Bangs and shakes objects
- Transfers objects from one hand to another
- Rolls over from tummy to back
- Responds to her name, turns and looks
- Babbles, making sounds like “da”, “ga”, “ba”, “ka”
- Pays attention to what toys can do (make music, light up)
- Looks towards objects that drop out of sight
- Becoming more aware of her surroundings
- Notices if parents are present (or not)
- Reacts differently to strangers
- Expresses excitement, happiness and unhappiness
T was able to do all of the above except for two things- the babbling of distinct sounds and banging/shaking objects. While T does “talk”, it’s random, inconsistent and she really hasn’t made any distinct sounds when doing it. As for the banging, she doesn’t bang objects together or on a table or anything like that. I guess these are skills that she will hopefully develop in time.
Overall, the experts thought T was doing so well and they were really pleased.
As for her growth (based on 6 months adjusted age)…
- Weight: 16.1 pounds (between 25 and 50 percentile)
- Length: 25 inches (between 10 and 25 percentile)
- Head circumference: 18 inches (above 95th percentile)
Unfortunately, the large head circumference is a bit of a worry and the nurse practitioner and the neonatologist were alarmed. I guess looking at T, she doesn’t appear to have a large head but at certain angles, it is apparent. Given that her father is very tall and also has a large head, we didn’t really think anything of it. Her large head could be a familial trait, or, as the doctors informed us, it could be because of a medical condition called hydrocephalus. After hitting the internet and searching Google, I see this is a very serious and scary condition to have. I can’t deny I’ve spent numerous hours online reading up on this and that and basically freaking out. Now we’re waiting to hear back from T’s pediatrician to see what he thinks about the whole situation. They need to look at several things like has she always had a large head, how fast has it grown, is it an abnormal growth rate, etc.
We’re hoping for good news and that everything will be okay with our little girl. She’s already been through so much. We’re trying to think positively here but there is no denying that her head measurement is quite alarming, especially for a preemie. Keep Little Miss T in your thoughts, please!
Return to the NICU September 1, 2010
Tomorrow we’re off to T’s 6 month adjusted developmental clinic at the NICU where she was born. I’m not sure what to expect other than the obvious- that her development will be evaluated. I’m a bit anxious/nervous to hear what the experts think. No Mom wants to hear there’s anything “wrong” with their child but at the same time, if there’s an issue, we also want the assistance to make any issues better. It’s kind of a double-edge sword.
I’m personally really curious to see how T’s prematurity has affected her development. It’s pretty obvious I still carry a lot of guilt over T’s premature birth. I’m naturally worried about how prematurity will impact her growth, development and overall life. With a preemie, you don’t always know the immediate affects of prematurity on an infant. Who knows what she is going to be like one year from now, two years later and so forth. So, I carry-on each day knowing she’s a bit behind in this and that but eventually, hopefully, she’ll catch up. It pains me knowing she has to catch up and that she has to work that much harder for things, but it is what it is. I know she and I will be a bit stronger for it in the long run.
Well, wish us luck tomorrow and here’s hoping I don’t lose my shite returning to the NICU, again.
It Feels Like Home 