I’m usually not a crier. But I was watching a recorded episode of Nashville last night, and a particular scene really got to me…
Now I know I didn’t purposely do anything to cause Nora and Nadia’s premature births and ongoing related issues… But I’d be lying if I said I didn’t feel quite guilty. I mean, my God, Nora had bacterial meningitis and sepsis as a preemie, two separate episodes. When they told us they said, I’m so sorry, as if she was already dead! I’m honestly shocked she’s doing so well. We still have many follow-up appointments, which reminds me, we need another hearing test for her, as she’s at-risk for hearing loss for several more years yet, I think until she’s five maybe. And Nadia, every time I look at her and will her to crawl or make a babbling noise I’m reminded of her brain bleed.
There is the rational side of it all… But then there is the side who wishes she could go back. To beg for the cerclage, or do more research on my own, or rest more during both my pregnancies. I don’t know, anything to change a 29 and 30 week delivery. And then I think of our frozen embryo. How do we give that little boy or girl a chance? Is it irresponsible for me to attempt another pregnancy? What if I delivered at 24 weeks next time? How would I live with the guilt of raising a possible special-needs child knowing my body was the cause?
I think back to the month we started our first round of IVF, how scared I was of the process… And here now, with two beautiful girls… The situation may be different, but the fear remains.
Today was Nadia’s second visit with the Physical Therapist (PT). The PT was actually quite happy with her progress, although personally, I see no progress. Nadia still isn’t crawling, although maybe she is reaching to the sides for toys when sitting a bit more now than she was a week ago. Nadia will use both of her hands to reach and grab for toys, but she much prefers her right, and also leans very much to her right when sitting. I think the PT was going to review Nadia’s most recent brain MRI to see on which side the brain bleed occurred.
Homework for this week is more of the same… encourage Nadia to reach when seated and during tummy time, both to the sides and in front of her. The PT also suggested taking Nadia to a park to swing, as she suspects that part of Nadia’s issues are related to her strong dislike of motion. I guess I’m not sure how much I believe this, as we’ve had her in swings with a lot of movement at home since she was born… I have noticed that Nadia prefers not to be held when drinking bottles. She much prefers lying on the floor or propped up on a pillow. Is that weird? Anyone else’s child not like being held when eating?
Do you ever feel like some appointments are complete wastes of time…?
Nadia had one episode of SVT in the NICU, which did require her heart being shocked with those paddle things, but… Over a year of medication three times a day seems excessive based on one episode, when she was a preemie, whose heart wasn’t ready to beat on its own outside the womb to begin with yet. But, I’m not a cardiologist, so… Our appointments seem a bit pointless though, as all they do is listen to her heart, adjust medication based on weight, and send us on our way. Three hours in the car round trip, for maybe an hour at the hospital.
Today they decided not to adjust her dose, but rather to leave it stable and thus begin to wean her off the medication. We can home with a portable heart monitor she will wear for the next 24 hours. We see the doctor again in three months, at which time another 24 hour monitor will be sent home with us. I think we repeat that every three months for the next year as her dose continues to be lowered. I am thankful we haven’t had more heart issues… But the drives to Iowa City, this being the third in the last seven days, are wearing me out. Nadia was super happy after her EKG, in the photo above… but the drive home was another story. I think she is getting her two top front teeth. And they seem to be coming in pretty far apart. Is that an issue??
This morning was Nadia’s 9-month check-up with our regular pediatrician in town. No shots, thank you God! I did leave a bit discouraged though…
Last week we had Nadia’s neonatology high-risk check-up in Iowa City, basically a visit where they check milestones, fine and gross motor, social, physical, etc. It all looks like playing with her to me, but I know it’s a lot more than that! I left that appointment feeling great. There were a couple of areas where she wasn’t performing at 100%, but they evaluate based on an age range, that visit being 6-9 months. Her adjusted age as of today is 7 months 15 days, so they said she technically had several more weeks to meet all the milestones they were testing for before they would be concerned.
So today, our pediatrician was more concerned, specifically regarding:
- Nadia makes no attempts to crawl, basically just lies on her belly and cries rather than attempting to push herself up on her hands or knees.
- The only sounds Nadia makes are the traditional high-pitched squeals babies make. She does not make other babbling sounds, such as da, ba, etc.
Our pediatrician is referring us to physical and speech therapy. I don’t know the details yet, as those providers are supposed to contact me to set appointments. I don’t want to be that mom who’s in denial that there is a problem with their child. But I do think its a bit early to start therapy. But… what the heck do I know? Perhaps the sooner the better. Iowa City always tells me that preemies are known to be a bit delayed, even for their adjusted age. Isn’t it possible Nadia will catch up on her own, without therapy? Nora did everything early, so this is all new to me. And perhaps I’m just terrified to learn there really is an issue with Nadia’s brain… remember her brain bleed in the NICU, and the spot on her brain they found on the MRI that showed lack of oxygen at some point shortly before birth?
Last week Nadia did also see ophthalmology in Iowa City. Thankfully her optic nerves, retinas, and vision is perfect! We don’t need to return to them for 12 months!