Health Updates

I haven’t updated much about the girl’s health lately, although we continue to have follow-up appointments at the University related to their prematurity.

Nora’s last appointment with immunology was good, I think… Her IgG level was normal, which is amazing, as that was her issue since birth they have been monitoring. Blood flow cytometry was abnormal though, again. At her previous appointment we were told not to worry and it would be rechecked. Well, the recheck was abnormal. Do I worry? I’m guessing I shouldn’t since the results were technically back several weeks ago and we still haven’t been called. Maybe Nora’s chart was overlooked? I emailed her doctor today and asked for an update. I googled abnormal blood flow cytometry and got scared…

Nadia’s last appointment with cardiology was awesome! Her holter monitor results were normal and thus they released her from their care. One more specialty clinic off the list for follow-ups!

Nadia was due for a NICU High Risk Follow-up Clinic visit around 24 months of age, which was August. I emailed them today to schedule an appointment. As important as those visits seem, to me anyway, as they check overall development, I feel like the woman in charge of scheduling is an airhead. They never seem to be at regular six-month intervals. I do actually have a few concerns about Nadia’s speech. I can understand pretty much everything she says, which is surprisingly a lot, but I doubt anyone else can. I’m not sure how to describe her issue, so I was hoping the high-risk team could listen to her talk. I don’t think she has a lisp per say, but it’s almost like she skips certain sounds in words. Maybe normal, I don’t know, but with looking back and knowing she had a brain injury (lack of oxygen) at birth, I fear every little thing. And I don’t remember Nora ever going through such a speech issue when learning to talk. But yes, I know every child is different. We’ll see…

I think I’ve mentioned that Kona, our dog, has been super annoying lately with waking me to go outside several times a night. Then this past Monday morning she started shaking her head, which was a clear sign to me of an ear infection. We took her in and sure enough, so got an ointment. As for her wanting to pee all the time, the vet ran lots of tests on her blood and only found high triglycerides, which she wasn’t even worried about. So… next step, testing her pee for a bladder infection. The vet wanted to use an ultrasound with a needle to extract some urine directly from her bladder. Eric laughed and said he would handle gathering the pee. So we need to get some and take it in for testing. Eric laughed and said it would be cheaper and easier just to treat as though she has an infection…

And me… I have an appointment coming up with a new general practitioner, just to establish with one in this city. And then I need a new OB/GYN too. I’ve been avoiding even beginning the search as my issues are overwhelming to me. Maybe the new general can give me some recommendations, or maybe she will even be willing to refer me to Iowa City so my insurance will pay for the OB/GYN I used to see there and who knows my entire history. No updates on our frozen embryo… I probably need an OB/GYN before we even get into thinking about that and our options.

Sisterly Love

Why is it, no matter where I am, no matter what I’m doing, I always feel I should be somewhere else?

When the girls wake in the morning I feel like I rush us to get ready and out the door. But for what? Just to daycare, when often my plans aren’t all that important or necessary. (Unless you consider adult interaction as important and necessary.) When I drop them off at daycare I feel guilty for allowing someone else precious time with my babies. But when I’m home with them I’m sometimes losing my freaking mind as they ask for the seventh different item for lunch, which they still don’t eat. And I miss them now that I have a few free moments after my haircut to myself. Maybe the whole mommy guilt thing is real, regardless of the situation, whether they are home with us, or happily playing at daycare…

Last night Nora complained her ear hurt. Last week she finished amoxicillin for an ear infection, which gave her a nasty rash, pictures below. We’re not convinced it was a true allergic reaction, rather probably more likely a maculopapular rash, but none the less they told us to quit the amoxicillin early, although just one day.

 

So back to last night… it was a Sunday evening. Of course only the ER was available, and since she was acting fine other than some complaints of ear pain I decided to wait until this morning.

This morning… the first thing Nora told me when she woke was that her right ear hurt. She was consistent with which ear at least. So back to the doctor we went. I originally had a Mom’s Club event scheduled this morning, which I was hosting, so that had to be rescheduled for later in the week. Of course. It’s not like I have a lot of events in my life, but it just so happens whenever the girls are sick I tend to have something planned. I call it Mom’s Law. Que the feeling of always needing to be where I’m not.

I’ve never seen a kid more happy and excited to see a doctor as Nora was this morning. She literally bounced into the office, happily got weighed and her height measured. (See pictures of happy Nora at doctor’s office below.) Nora was even excited for the blood pressure cuff and for her ears to be examined. And sure enough, an infection in her right ear this time. As a precaution amoxicillin wasn’t given, but rather Cefdinir. Hopefully she’s willing to take it, as the pharmacist told me its pretty nasty even when flavored. So that’s fun!

 

In other Nora news we got results back from her last visit with Dr. Bayer from Immunology at the University. And the news was good! Nora’s IgG was a bit down, but still in the normal range. And she made antibodies to 19 of the 23 strains in the last vaccine she received in December. Such a relief to receive all good news! And the best yet, she doesn’t need to see Dr. Bayer now for over a year!

And a bit of sisterly love to end with today!

 

Nora’s 3 Year Well Check

I just read the first post I wrote after Nora, well, baby A, was born. And now writing about her three-year check-up. I still get a little emotional. Maybe it’s this darn new anti-depressant!

Check-up went well! Probably a little hard to see the pictures below, but Nora was 28 lbs. 4 oz. which is 31% for weight, and 3 ft. which is 48% for height, both adjusted. This was our first visit for Nora with our new pediatrician since we moved, so we had a lot to discuss. This visit did remind me that Nora is due for more immunology blood tests… and I was so hoping they could be drawn at the MedLabs attached to our ped’s office. But oh no… Can’t be that easy! Apparently the University is the only lab around here that has the technology for these specialized, rare tests. I guess I’ll have to find another day for that super-fun (I can only assume) visit. No shots at this exam, as Nora is all caught up on vaccinations, thank God!

I’m really trying not to stress as much about Nora’s eating, or lack there of. Daycare continues to tell me she eats well there, which baffles me. She definitely has certain meals at home she will eat, and some she will only pick at. But she is gaining weight, although still with the help of Pediasure. I’m actually going to start buying the lower-calorie version, I think they are called Sidekicks. Maybe fewer calories in liquid will help her eat better. We shall see…

The picture above is quite telling… A year-year exam with a binkie. I know we need to ditch it. But oh God, I dread it. So much about parenting, and so often alone lately, feels so hard. I want something to be easy. Allowing her to continue with the binkie is so much easier on me, but I totally realize not better for her in the long-run. We’ll definitely be ditching the binkie on a week Eric is home!

All good news for Nora

If we’re friends on Facebook you probably already know a lot of this…  Nora’s appointments at the U last Thursday went really well, we got all good news!

Eric wasn’t able to join me, per usual, so I was up at 5:30am getting ready and ended up having to wake Nora at 6:30am so we could leave our house by 7am.  Thankfully she took several ounces of milk, sometimes she pushes the bottle away first thing in the morning, especially if she’s woken.  So I packed everything up, strapped Nora into her car seat and we were off.  Thankfully she slept almost the entire way there, and babbled to herself the remainder of the time.

First stop when we arrived, Java House.  Oh how I’ve missed their dark chocolate frappes and cherry almond scones.  As I was waiting for my order a strange calm came over me.  Every time I’m back at the U I’m reminded of harder times, our long months in the NICU, so much worry during that time.  And yes, there were good times there too, my work at the hospital and the amazing people I met, and miss dearly.  I miss Iowa City so much, and our life there.  Just this morning I was looking outside and thinking, oh, if we were still back in Iowa City I’d throw Nora in the stroller and walk to a coffee shop.  That isn’t possible here.  Nothing to walk to…  Makes me a little sad, I miss my old life, and yet looking back, I’d never want to relive all the horror of Nora’s early birth.  We’re in a better place now.  Perhaps I can learn to enjoy my time in Iowa City during Nora’s visits, and be thankful she goes home with me each day.

Our first appointment was for a repeat hearing test with otolaryngology.  The test itself is simple, they stick what looks like an ear bud into each of Nora’s ears, separately, and push some button on a small handheld device.  Apparently the device sends a sound into Nora’s ear and then records the vibrations of the inner ear to signify the sound was successfully ‘heard’.  I’m guessing I’m not explaining that correctly, but you get the idea!  We’ve had these tests every 3 months for her first year of life and now will continue every 6 months until she is five years old.  The reasoning, her meningitis, which is known to cause bony growth of the cochlea and thus hearing loss.  Great, four more years of worry. For now though, all is good, she passed with flying colors!

Next we met with the high risk infant follow-up team, which we see based on both her premature birth and her meningitis.  They always hand me a packet of questions to answer about her development, and then two doctors ‘play’ with Nora for roughly an hour.  They see what skills she has mastered and such.  They were extremely happy with her growth, up to 15 pounds 1.1 oz according to their scales, and just over 2 feet in length.  So still small, but following her roughly 8% curve for her adjusted age.  We talked a lot about her eating, they still recommend fortifying my milk, which is another story I’ll mention below…  They also suggested letting her play more with food, even if she doesn’t eat it.  But you know me, I hate messes, so this is going to be hard for me!  They suggested putting yogurt on her tray to see if she would feed herself with her hands.  So I tried that.  She did put her fingers in her mouth a few times, but I’d say she was much more interested in smearing it everywhere, including on me.  (Do they make disposable covers for high chairs???)  Overall, they were pleased with her though, rating her above her 8 months adjusted age in all categories.  Sleeping was also mentioned too and I admitted still rocking her to sleep for naps and at bedtime.  They suggested starting to see if she will put herself to sleep, so rocking for just a few minutes, putting her in her crib awake, and not taking her back out of her crib!  They said if she cries I’m to check on her after one minute, and then keep doubling the time, so at 1, 2, 4, 8, 16 minutes, etc.  Well, I tried this with one of our naps, she cried for an hour with no sign of laying down or going to sleep on her own.  So I failed, picked her up, and within 5 minutes she was asleep from rocking.  I guess I have to work on this as much as she does…

One of my concerns with Nora was her not responding to her name.  The doctors assured me this is normal, as Nora is so, so busy that she just doesn’t take the time to really pay attention when I call her name.  They said this will come in time as she gets older and recognizes her name.

Our last appointment of the day was with the immune team.  There isn’t really much examination with them, as what they need to examine is really more internal, and thus, more blood tests.  The last test they wanted to run, which was drawn Thursday, looks to make sure that Nora’s immune system not only turns on to foreign invaders, but specifically recognizes the invaders she has been vaccinated against.  The results of this test will determine if she can receive live vaccines at her 12 month checkup, which would include chicken pox and MMR.  They also rechecked her antibody levels, and will continue to recheck her IgG (one of those antibodies) monthly.  We don’t have any of the results back yet, but I’ll update when I hear from her doctor.  And thankfully the blood draw went really well, one poke, and she hardly cried, being they applied the numbing cream!

So about fortifying my milk…  Nora has been pushing the bottle away more and more, and I can’t seem to really figure out why.  Maybe she just really isn’t hungry sometimes when I offer her milk…  Or maybe she is learning she doesn’t like the taste of my frozen milk, which I happen to know smells and tastes like vomit thanks to the high lipase levels in my milk.  For months Nora drank my frozen milk with no issues, but the high risk doctor said it’s very possible that as she is tasting solids foods, she is learning what tastes she likes and doesn’t, and my milk might now be one she doesn’t care for.  So for the past 24 hours Nora has been on formula only, as I’m seeing if she will take in more ounces.  She pushed the bottle away this morning, but it was first thing when she woke and thus maybe she just wasn’t ready to eat yet.  I’m going to be so, so sad if I have to donate all my milk and completely switch her to formula.  I mean, I know she is almost a year actual, but still…  All those hours attached to my pump.  And wanting Nora to have breast milk over formula…  Ugh.  Not sure how I’ll deal with that should the time come…

***  I probably will be writing several more password protected posts in the coming weeks.  I’ll leave the password the same, so if you already know it, it should work for the future posts.  If you don’t know me in real life and would like the password, feel free to email me at stefaskeland@gmail.com.  ***

February 1, 2016 – 46 Weeks (35 Weeks Corrected)

Nora’s immunologist called yesterday… They are officially diagnosing her with Transient Hypogammaglobulinemia of Infancy. The doctor told me not to worry, but that’s much easier said than done. I already started googling, but stopped, figured it would just scare me more than anything.  Background, for those of you who don’t know, IgG is a protein in our blood, an antibody, that fights viral and bacterial infections. Here is what I know from the doctor:

  • Nora’s IgG levels over the past three months have been 92, 99, and now 107, so they are steady. Our bodies use up our IgG, so to speak, every 3-4 weeks, therefore we know Nora is making some IgG on her own. Normal levels for her age though are closer to 300.
  • All infants go through a period where their IgG is slightly below normal, basically as the antibodies they received from their mothers wear off and their own bodies start to take over. Preemies are even more susceptible to such a dip in levels being their time in the womb was shortened.
  • Some children’s bodies, for whatever reason (there are many theories) take much longer to reach normal IgG levels, up to 3 years, sometimes up to 6 years. They believe Nora falls into this group, which accounts for roughly 1 out of every 1,000 live births in the US.
  • Daycare is still out of the question, and likely will be until her levels are within normal range being she is much more likely to catch viruses and bacterial infections.  I’m actually shocked she hasn’t been really sick yet this winter.  Although we do shield her from pretty much all children and most adults aside from a select few.
  • We meet with the immunologist later this month at which time they will run another test…  Way back when in the NICU a test was run to make sure Nora’s white blood cells ‘turn on’ when they encounter infections in the blood, which they did.  Now they will take that test one step further and make sure her cells turn on to the specific diseases/infections she has received vaccinations against.  The results of this test will help them decide if she can have live vaccines and essentially catch up on the vaccination schedule for her age.
  • Plan for now is to continue checking her IgG level monthly, as we have been, continue to shield her from other children and sick adults, and contact her immunologist if Nora does develop an infection needing antibiotics, at which time she would be given a transfusion of IgG (donor IgG).

I really only talked to her doctor for maybe five minutes…  And I obviously have a lot of questions.  What if she doesn’t grow out of this?  Is there a chance she won’t grow out of this?  Is this hereditary?  Are other children of ours more likely to have this as well?  The internet answered a few of these, but really only left me with more questions.

Onto happier topics…..

Nora is 10 1/2 months actual and 8 months corrected!  Still pulling herself up to everything, and sometimes daring to let go.  I’ve seen her stand on her own for a few seconds here and there, but nothing substantial just yet.  Two teeth are just through her gums on the bottom, I think you can see them in one of the pictures below.  She is still small weight wise, just 14 lbs. 12.5 oz.  Still on the charts though, roughly 8% for 8 month olds.

We’re still offering her solids from time to time, although fortified breast milk is still her main source of food.  Usually twice a day I offer her something other than milk, this morning was some baby-food, rice cereal with pears, which she really seemed to like, didn’t spit any out!  Usually for dinner we offer her a little of whatever we are having, last night she got a strip of pizza…  She gnawed on the crust and seemed to approve.  She already much prefers to feed herself, pushing my hand away if I try to put something in her mouth.  I’m surprised she lets me spoon feed her, although I have noticed she tires of it quickly, never finishes an entire container.  She has also started to push the bottle away.  Sometimes at night before she goes to bed I try several times with her before she will take the bottle.  I know she has to be hungry…  Should I stress about it, or just trust her that if she pushes it away she doesn’t want it?  I guess since we are trying to get her to gain weight I feel like she needs all the milk I can get into her.  She is still waking up at night, ever since I noticed her two teeth.  Maybe she is getting more…  She took 5 oz of milk at midnight last night, which is a lot for her.  And seriously, do you people really clean the high chair multiple times a day???  I’m already soooo sick of that task!  Maybe I need a chair that is easier to clean.  Any recommendations?

I have two other questions for those experienced parents out there…

First, Nora seems to cry in her sleep a lot?  In fact, sometimes for several hours she will be fully sleep but making whining and crying noises.  If I go in to her, often I’ll pick her up and she will continue to cry/whine in her sleep, almost like I have to purposely wake her up for her to stop.  Is that weird?  Needless to say, for the past two weeks or so I’ve gotten less than 4 hours each night of sleep, as I lay awake listening to her.  I even have a cold sore to prove my stress and sleep deprivation.  Maybe the video monitor was actually a bad idea…

Second, I thought I read somewhere that children standing on their tip-toes is bad…  Is that true?  I often see Nora on tip-toes rather than her full foot.  Should I be putting shoes on her to help her learn to walk?  I purchased a few that were recommended by her pediatrician as good brands, but most days we are home, either in sleepers or lounge clothes, and obviously I don’t put shoes on her those days.

As always, thanks ladies, and enjoy the pictures of Nora!

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