I’m not a crier 

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.

Physical Therapy

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?

Nadia’s Cardiology Appointment

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. FullSizeRender 26Nadia 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??

Nadia’s 9 month check-up

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!

Behind again…

Maybe the titles of my posts should just be the dates from now on, as I’m always tempted to call them, Catching Up, as that’s all I do these days…

I’m pretty sure I missed several weekly pictures of Nadia. Well, I didn’t miss them, I took them, and posted them in the sidebar, but didn’t write specifically about them. Here is the most recent from last week…

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Nadia is still quite a fussy baby, but we’re learning how to make her a little happier. For one, MiraLAX is our new best friend. Our pediatrician suggested we add it to her bottles, about 1/2 tsp over the course of 24 hours. I actually make 20 oz of milk at a time and add it to that. She now goes more regularly and seems a bit happier overall. She’s having more periods of wakefulness during the day, and sleeping up to six hours at night. Which sounds nice, except that she wakes when her pacifier falls out of her mouth, so I still only get maybe an hour of sleep at a time. And throw in Eric snoring, Kona wanting to go outside, and Nora waking every now and again, well, I’m still tired. Always tired.

Nadia is starting to be more ‘social’. She coos and smiles when spoken to, will follow people and objects with her eyes, can hold a rattle, but won’t yet reach for it on her own. Maybe soon. We need to work more on tummy time. I’ve been pretty bad with it, as it’s hard to leave a baby on the floor with a toddler and large dog just waiting to trample her. I assume Nadia will roll much later than Nora did for this very reason.

Speaking of development, Nadia is right on track according to the high-risk follow up group in Iowa City. Their only concern was her weight, now 10 lbs 4.5oz, which is only 10% for her adjusted age. When we left the NICU she was closer to the 50% curve for adjusted age weight, hence their concern. We have another weight check at the end of the month and we’ll see if they want to increase calories at that point. We’re still feeding Neocate, which is meant for milk protein allergies. When Nora’s immunologist called last I snuck in a few questions about Nadia… Long story short, unless we saw blood in Nadia’s stools, enough that it was clearly visible (which is wasn’t) when she doubts Nadia is allergic to the proteins in milk. Dr. Bayer said it’s a very rare allergy, and her guess is Nadia has colic. Recommendation was to add milk back into Nadia’s diet around 9 months actual and see how she does. Without writing a book on just this topic, lets just say I feel awful that I gave up breastfeeding when I probably didn’t have to… But, as we all know, life doesn’t always turn out how we want or expect.

Next steps with Nadia will be checking in with cardiology (SVT) and neurology (brain bleed and lack of oxygen at birth) in the next few months. Nadia also sees urology for urinary reflux, but I don’t think we see them until she’s almost a year old. I’ll post updates from the doctors when I have them.

Moving onto Nora, although I’m sure I could write about Nadia for hours and hours…

Nora is 21 months, and some days, a little ball of (too much) energy.

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Nora has more teeth, but refuses to let me count. By glancing I’d say her mouth is full, but I know there must be more coming. Nora also has more words, so many these days that I can’t possibly list them all. Her favorites are: sissy (sister), cheese, appa (apple), juice, NO, tree, bye, hi, shoes, socks, chair, car, dog, Kona, baby… There are just too many to list. She still says, ‘oh boy’ all the time, and usually when it’s appropriate. Her energy seems to be non-stop some days, but every now and again she still brings her pacifier and blanket to me on the couch and wants to snuggle.

Nora saw the high-risk follow up team the same day Nadia did, and they had all great news for Nora. They were happy with her skills in all areas, ranking her well above 21 months, even though she is really only 18 months corrected. The immune group was happy with her results as well, as her IgG, is now about half what the normal is for her age. I know, that doesn’t sound great, but it used to be about 1/10 the normal, so this is progress. And she still hasn’t really been sick, knock on wood. Eating is still my biggest struggle with her, as she is just 20 lbs. Her favorites are still chicken nuggets, mac and cheese, blueberries, apples, and all kinds of cheese. Its getting harder and harder to make meals out of just a few items time and time again.

I still wonder most days how I got so lucky to be the mom to these two perfect little girls!

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Day of Life 36

First, an update on Miss Nadia. She’s doing well, I think. More on the I think part later. Weight is 5 lbs 14 oz I think. She’s been taking two bottles every 24 hours, and of those, usually taking about 2/3 of each feeding from them, and then the rest still through her tube. So we’re slowly getting better in that arena. Still on oxygen, and I need to ask again for them to explain to me… I thought she was barely on any, but I swear today she was on .25L of 100% oxygen, which seems like a lot to me, since normally she was on 21%, which is room air. I’m hoping there isn’t an issue with her lungs that I just don’t know about yet. Only other update I know about is that they decreased her SVT medication from 4 times a day to 3 times a day, although I don’t know the dose change, or even if it changed. Perhaps just a scheduling change. I’ll worry about that when she’s home and I’m in charge of giving the meds.

As for me, I was in a TERRIBLE mood all day. I suspect it has to do with the fact that I haven’t been able to see Nadia since last Saturday because of this awful cold I’m battling. I think I’m actually on the mend, so hopefully I can see Nadia on Friday and then again on Sunday, as there is another home football game on Saturday. The I think part to how Nadia is doing is because Eric went to visit her today, and I feel like he never really gives me the whole story. Not that he hides stuff from me, but more that he just knows and understands it all, but since I don’t, I ask the nurses a lot of questions when I’m there visiting.

In addition to not being able to see Nadia, I’ve been pissy about other stuff too… Part of me feels like everything is just so sucky right now. Postpartum depression? I’m already on meds for that, why aren’t they working?? Feel free to skip the bullet points of my complaints:

  • I hate pumping. No seriously. I hate getting up several times a night to a pump and every few hours during the day, instead of a sweet, or screaming baby. On the plus side though, my Ameda Platinum rental arrived today, and I love it!
  • What mom has to be away from her five week old baby for almost a week? Yes, I hate the NICU rules. I mean, I get it, and it’s worth it to keep Nadia and the other babies healthy, but I still hate it.
  • I hate we’ve spent three months so far in the NICU between Nora and Nadia. I hate the NICU. I hate my body spits out children early.
  • I hate that I feel like nobody understands how bad this situation sucks. Notice I said I feel like, as I totally understand that many of you reading do know how badly the NICU sucks. Some days though it’s hard to remember others get it. I often just feel like I’m stuck in this sucky situation all alone.
  • I hate that I have no idea when Nadia is coming home. My personal hope is still set for October 15th, but that’s quickly approaching, and I so hope I’m not disappointed.
  • I hate that I think I’m addicted to my iPhone and/or Facebook. I feel like every time I’m stressed, which is always, I grab my phone. I hate that so much of my time with Nora involves me looking at my phone. Same goes for my time with Nadia, what little time that is lately. Of course, I’m often taking pictures, but then I get sucked into posting them, and replying to comments, and oh, you know how it goes.
  • I hate that my cleaning ladies act like I’m a spoiled, lazy bum. Or maybe I’m afraid they think that of me. Or maybe I’m afraid I am that. The two that were here today were especially quiet with me. Normally they will chat my ear off, but today I totally got the impression they were wondering why I was just hanging out watching them clean my house. I need to start leaving when they’re here…
  • I hate that my cleaning ladies (I swear) never actually clean the master shower…
  • I hate that my phone will only take 10 pictures and then is full. I don’t need the new iPhone, but damn it’s annoying to have to upload pictures before I can take more. (I know, 1st world problems.)

Okay, sorry, I’ll stop complaining now. Just a crappy day. Well, actually, I shouldn’t say that, Nora and I hung out and she made me laugh more times than I can count. She really is super fun. Even if she screamed for naps… We ran a few errands and she was giggling at all the people we encountered. She is something else! So yes, it was a good day, just so hard not seeing Nadia. Tomorrow is MOPs, and I think it’s good for me to go, to spend a few hours with other moms in this area, forge friendships and such. And I probably do need one more day to get healthier. I can make it one more day without seeing Nadia…