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 Immune Results

Dr. Bayer, Nora’s Immunologist just called with some bad news…

At our last visit on February 1st Nora’s IgG level was 453, the normal range for her age being 453-916. Now it’s only 365, so quite a significant drop. The doctor told me not to worry, as we know Nora’s body can make some IgG. The rest of the test results aren’t back yet and could take a couple of weeks as they are rarer and take longer to complete. The original plan was to see Dr. Bayer again in 12 months, but now we must return in 6 months for more tests, or sooner if Nora’s starts to develop infections.

I’m bummed… but I know it could be worse. It could always be worse. For the time being Nora is healthy, except for a horribly bad cold. I’m focusing on the good!

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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They’re Both Napping

They’re both napping… So I shall type fast… While I quietly eat these potato chips and dip with black licorice for lunch…

  • I was productive today. I cleaned out and organized the panty and cabinets, and I might do the fridge and freezer later this afternoon! Oh, and I cleaned the entire house as well! Okay, well, the cleaners did, but lets just tell everyone I did.
  • A clean house relaxes me. I’m sitting here listening to Christmas music on my new Amazon Echo. Does anyone have one of these? So far I’m not seeing the value. I know it does a lot, but all I figure I’ll use it for is listening to my Audible books and Amazon Prime Music. Maybe Nora will enjoy talking with Alexa… Maybe Alexa can translate Nora’s Chinese (?). 
  • Last week I took Nadia to Iowa City for her cardiology appointment. Did I already write about it? I can’t remember, so skip this bullet if I did. The appointment took forever. First they wanted a blood pressure on each limb, with her calm, of course. Nice try people. Then they wanted a EKG, with her completely still and calm. HA! I guess both were fine as the doctor increased her dose of Propranolol to 0.3 ml of I’m not sure how strong of a dose, every eight hours based on her weight and sent us on our way. We follow up in three months for another EKG. This Friday, two days from now, Nadia has another appointment in Iowa City, this time for her immature eyes.
  • Speaking of Iowa City, we were there yesterday for Nora. She had an immune blood draw and then a follow-up with ortho for her hips since she was born breech. Nora’s IgG level in August was 226, and yesterday it was 305, so a huge increase, and great news! It’s still far from normal of around 600 for her age, but we’re getting closer. And Nora’s hip x-ray was normal, so now we don’t need to return for an ortho visit until she’s 5. OMG, I can’t even imagine Nora five years old…
  • I’m seriously exhausted from taking these two girls to appointments in Iowa City. Do full-term babies have this many appointments in their first years of life??? These don’t include any of their regular well-baby exams.
  • Our Christmas tree has been up for two days, but it’s still not decorated. Am I the only person that loves a decorated tree, but hates the process of decorating? I always imagine sitting around as a family happily putting the ornaments on the tree. Somehow it never happens that way. I probably should be doing it when the girls are napping… Maybe tonight Eric can help me.
  • I did set up our Nativity scene… And as I was setting it up I told Nora all about each statue. And then I realized that we’re horrible about teaching Nora about religion, we rarely even take her to church. Why do I dread attending mass each week? The hassle of taking two kids? Of getting up early? I feel guilty, like I should want to attend mass each week. But I don’t. Is something wrong with me? How do I teach my daughters about religion when I can’t even make myself attend?
  • I’ve only ordered two Christmas presents so far… No clue what to buy anyone on my list, including Nora and Nadia. They don’t need anything.. I’ve mentioned Santa to Nora, but I think she’s too young to understand, right?
  • I might need to give up on using those blocks for weekly/monthly pictures. It’s so hard getting Nadia to sit in a chair with them. I got a few cute pictures of her last night, and decided those would be her 13 week photos… 
  • I must be slightly (a lot) OCD, as it bothers me now that all weekly pictures won’t include the blocks.
  • It snowed here this morning. Not enough to stick, but the first real snowflakes of the year. I’m already counting down the days until spring when the girls and I can more easily get out of the house each day again.
  • I’m down to pumping just once or twice a day. Wow, I have so much more time in my life!
  • Nadia seems to be falling into a groove, she wakes just once each night around 2am to be fed. Granted, I feed her around 11pm before I go to bed, and she’s normally awake again around 6am for her breakfast… I’m tired, but it could be a lot worse. Eric hasn’t done any night feedings, even though he totally could since we’re using formula now. I think Eric believes that since I stay home with the kids, that it’s my job overnight as well. He makes comments about how he has to be up for work and needs his sleep… How do other families handle this if one partner stays home? Does the one who works outside the home since help during the night?
  • I’m still disliking where we live. The house yes, but more the city. You know how you can search and find Facebook events near you? Well, it appears as if there are tons of kid related Christmas events where we used to live, but little to none offered here. I’m just so scared that raising our kids here is not going to be the experience I wanted to give them.  This topic probably deserves a post of it’s own, if I ever find the time.
  • I now have $75 worth (1,000 grams of powdered) Hipp Hypoallergenic formula that we can’t use. I ordered more after the first couple feedings, when I still thought it was going well, as I knew it would take several days to arrive. Does anyone feed or want to feed their baby this? Make me an offer… It’s still sealed.
  • Instead of exchanging gifts this year, my family mentioned vacationing together, although Eric wouldn’t be able to join us… Knowing we live in Cedar Falls, Iowa and want to drive (with little kids) to the destination, does anyone have any recommendations? Again, feeling like there is so little around us…
  • I feel so horrible that I haven’t made time for friends in my life lately. I mean well, I think of them often, but time gets away from me. Or maybe I’m just really bad at making plans and reaching out to others. I’m here alone so much, and would love the company, but the idea of getting two little kids ready to go anywhere in the cold discourages me, and how can I really expect everyone to come to me? How do adults stay in touch when they don’t live in the same city and feel so busy with kids?

Nora is stirring so I must go for now. More another time… I’ll leave you with a picture of her from this morning.

    Back to Iowa City

    I’m not sure where I left off last…

    Thursday Nora and I went to Iowa City for another Makena injection.  Apparently my insurance can’t figure out if they will pay if the injections are given at home.  I’m so hoping it’s worked out by this Thursday.

    Then Friday I went to Iowa City so Nora could get blood drawn for an IgG level.  Thankfully Eric had Friday off and could go with me.  We made a day of it, stopping at Costco and stocking up on everything we didn’t need but missed having.  Right after we got home that evening Dr. Bayer (Nora’s immunologist at the University) called with bad news.  A month ago Nora’s IgG level was 211, but it was now 188.  So…  Dr. Bayer wants to check whether or not Nora is losing IgG through either her stool or urine.  If she is, I think this would be another issue altogether, but I’m not even thinking about that yet.  Dr. Bayer told me not to worry yet, that her level was essentially the same and Nora still has plenty of time for her level to increase to the 700 range of normal.  But of course I’m going to worry.

    So today, back to Iowa City for Nora’s appointment, just with a nurse, to somehow collect stool less than an hour old, and urine.  Sounds like fun.

    And then after Nora’s appointment I’m having my weekly ultrasound to check my cervical length, and then I’m meeting with Dr. Hunter, the high-risk OB doctor I was supposed to see last Monday.  I’m anxious and nervous.  And of course Eric can’t go with me, it was too short of notice for him to reschedule an entire day of clinic patients.  Should be fun keeping Nora entertained during my appointments…

    I have some ultrasound pictures from last week, but I’ll wait to post those, as I need to get on the road, and I assume I’ll get a few more pictures today.

    Time Got Away From Me!

    Seriously people, time got away from me.  I don’t even remember the last time I wrote…  But I’m back, to Iowa, back to my normal life, and thus, an update!  But where to start!

    Materniti21 Results – Let’s start with the exciting stuff!  Last Thursday my doctor’s office called with my Materniti21 results.  And it was all good news!  Results were negative for any chromosome abnormalities, and…. it’s a girl!  I’d be thrilled with either a boy or girl, but I think two girls so close in age will be fun!  We had an ultrasound way back when my blood was drawn for that test, which I don’t think I ever posted.  A profile picture, and then a little foot, which was 1cm long at 12 weeks.

    baby us        foot

    Belly Pictures – I guess I need to start these again.  I personally hate them, but I kind of like looking back and comparing, so I guess I’ll do them again…  This was taken this morning, so a bit over 13 weeks.  Yes, I cut my head off on purpose 😉  And I think my behind is actually larger than my baby bump…  I better cut back on my McDonald’s runs.  I’m in maternity jeans but regular shirts still.

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    Nora’s IgG Results – Finally got these back!  Last check was only 107, and it’s now 211, which is hugely encouraging.  I mean, it’s still a far cry from normal, which is around 650, but we’re getting closer.  And really, it’s just good to know it’s increasing.  They still want to check it every 4-6 weeks until it’s in the normal range.  Ugh.  But it could be worse.

    Las Vegas – I got back last night from Las Vegas, a trip Eric purchased for my birthday, for just my mom and me.  I was seriously scared to leave Nora, but I have to say, Eric really impressed me.  Even if his parents were there to help.  My mom and I had a wonderful time, eating, shopping, sightseeing, etc.  It was just nice to get away, and get an actual night’s sleep, without peaking at the monitor every hour!  We stayed at the Venetian and even had a limo from and back to the airport!  I’m still exhausted today though, as I think we walked over 17 miles!  I took some random pictures, if you’re interested, click here.

    Otherwise, I’m not sure what is new…  I lead a really boring life you know!  Nora was really cute this morning when she saw me…  Huge smile!  And she was super sweet all morning, didn’t seem to be as clingy as last week.  She played on the floor without needing me right there.  She even attempted to lay on Kona, and Kona’s bed, which is currently in the middle of our living room.  And, she took a two-hour morning nap!  That never happens!  So I was actually able to shower and relax!

    Alright, until next time, I hope you’re all well!

    11 Weeks!

    I made it to 11 weeks, and 3 days, to be exact.  Last week was rough…  I had a TERRIBLE cold/sinus infection, which just made me feel even more terrible than I have been lately.  I literally laid on the floor and tended to Nora, counting the minutes until Eric got home from work.  Only problem with that, I never knew when that time would be until it arrived.  It’s quite the awful feeling to need someone to relieve you, but yet not knowing if that person can today, or tomorrow…

    Anyway, I’m feeling much better.  I felt nauseous a few times yesterday, but so far today I haven’t felt sick at all.  Granted, I’m still taking the Unisom and B6, so that could be masking it all.

    (Totally off the subject, but I’m at Panera writing this, and I swear to you, the girl sitting next to me smells like a gerbil.  You know, that awful pet store smell??  I might have to move seats!)

    I have lots of random things to share/discuss, so don’t say I didn’t warn you, this post could be enlightening for some, and a drag for others.

    Nora’s IgG – STILL waiting on that level.  Why you ask?  Well, we went last week.  Did I already complain about this on here, I can’t remember?  Anyway, they wouldn’t follow the order of a heel stick, claiming they had to basically start an IV to get enough blood from her.  It was dramatic and tragic and of course she screamed, and I wanted to as well.  The doctor called me Friday.  The lab ran the wrong test.  Yes, I shit you not, it was all for nothing.  So back this morning we went, and it was just as bad.  They followed orders this time, a heel stick, but claimed they needed twice as much blood as I happen to know they need.  So they stick her heel twice and her big toe once to get enough.  It took 20 minutes of them squeezing the life out of her foot, and her screaming, of course.  I give up people.  I hope the level is good, although I fear it will still be low.  Last I talked with the doctor, they still want to wait on live vaccines, as even though her antibodies levels other than IgG are in the normal range, they are in the low-normal range, so waiting is better I guess.

    New Therapist – I’ve been thinking a lot lately about how much I hate living here in Cedar Falls…  Lots of pent-up emotions over not choosing this location, feeling like I had little say, etc.  Moving was stressful, Nora’s health issues still wear on me, and now another pregnancy to worry about….  I guess I figured it couldn’t hurt to share/vent some of these issues with someone trained to help me manage it all.  I made an appointment with a woman who specializes in postpartum depression, although I’m not sure that’s what I have.  My first appointment with her was last Tuesday, and she was super nice.  We didn’t accomplish much, you know, the first visit is all getting to know each other… in other words, rehashing the past.  She asked me to come to my next appointment, which is next week I believe, with one goal I’d like to accomplish through therapy.  Um…  What the hell is that supposed to be?  To worry less?  To be satisfied more?  To communicate better with Eric?  My list goes on and on, but frankly I’m a little leery, how is me talking to someone two hours a month going to accomplish all that???  And oh, the kicker to it all, after May she is only seeing patients at a location 90 minutes from me.  Great, another thing not in this city.

    Cleaning Ladies – I know, 1st world problems, right?  But hear me out.  I hate cleaning, and I’ve loved having people come once a week and clean for me.  It’s glorious, really.  And honestly, if you have any way to add it to your budget, I highly recommend it, for your own sanity.  All that said, I think the company I’ve been working with needs to go.  Only problem, not a lot of choices here, which is really the ONLY reason I’ve kept them as long as I have.  My list of complaints with them is long, but mainly that they just don’t clean well, which is the entire purpose of them!  I think I’ve mentioned in the past that several of the girls smell of cigarettes, which really bothers me…  Most have ‘meth mouth’ and yes, I shouldn’t judge, but sorry, I am.  I give these people a key to my home.  I expect a certain level of professionalism, and lately, they have been lacking, big time.  When I first hired them the agreement was Wednesday mornings at 9am.  Well, they got in the habit of emailing me Tuesday the time they planned to arrive the following day.  Which I guess was okay.  But lately, they don’t show up during that window.  And it’s super annoying!  Last week the email said between 11am and noon they would arrive.  They showed up at 10:15am, just as I had laid Nora down for a nap and planned to jump in the shower.  No, it gets better.  So I tell them, I’m gonna shower, baby is in her room, can you start with the downstairs today…  When I got out of the shower one of the cleaning ladies was rocking Nora.  Who goes and just gets the baby?  Now granted, I do sort of know these women, I’ve been seeing them weekly for months now, but still.  They are there to clean, not to rock my baby!!!  Maybe I’ll try putting an ad on care.com and see if I can find an individual who would be better…  I hate starting all over with someone though.

    Still Exhausted – I feel like, for not working outside the home, all I do is run all over town.  Today for example.  Kona needed to go to playcare, which is Mondays and Fridays, so I ran her there on the way to Nora’s blood draw.  The drive from home to playcare is 20 minutes.  After the blood draw we drove home, another 25 minutes.  Then later this afternoon I have to pick up Kona, 20 minutes each way again.  I know, it doesn’t sound like much, but such a waste of time and miles.  And taking Nora with me is a pain, as I obviously have to get her in and out of the car.  As much as I like Kona getting the attention and exercise twice a week, I might need to ditch it soon.

    Feeding Nora – I know, she’s technically not one yet, so we’re still focusing on formula since she started refuses my breast milk, but June 1st, her due date, is quickly approaching.  Am I really supposed to stop formula at a year and have her exist on solids and whole milk?  She still won’t take a sippy cup with water, so I doubt she would drink whole milk from one.  And she is not big on most solids I’ve offered her.  Yogurt is our go to, she will almost always eat that, but otherwise, she’s tough.  Mac and cheese she did eat some of the other night, and bagels and cream cheese she seems to like, but not much else, well, besides puffs and yogurt melts.  At dinner we give her whatever we are having, but she didn’t even seem interested in french fries on Sunday.  I gave her a piece of apple to try the other day, she bit off pieces but spit them out, which is what she does with most things.  I feel like I’m constantly worrying if she is hungry, or thinking about what else I can try with her.  So much wasted food though.  My fall back is still bottles, but I fear the day when I’m not supposed to give her those anymore.  Then what?

    Daycare – My regular sitters will all be leaving for summer at the end of April.  I’ll have no help in May.  I know, I don’t work.  But I do have several appointments already scheduled…  Is it worth it to search care.com for help during May?  Starting June my favorite girl will be back for the summer and I think she is going to watch Nora two days a week.  I’m really going to try to schedule all my appointments on those two days, and make time to see out-of-town friends those days too.  You all better hold me to that!  I hate the thought of interviewing more people to watch Nora though…  It’s stressful and how do you know who is really good?  I normally use first impression, well, and background checks, but I know that isn’t always foolproof.

    Don’t Let Me Go by Catherine Ryan Hyde – I’m currently reading this, well, listening to it on my audible app.  It’s kind of dragging!  Has anyone read this??  I was told it was good, but gosh, it needs to get on with the story before I lose interest.  Pass along and good book recommendations!

    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!

    46 1 46 2 46 3 46 4 46 5

    Help is back!

    Christmas break is over for the college girls who watch Nora, so I’m back to getting some me time.  We changed the schedule a little bit, mainly due to their class schedules.  Each day is a different girl, Monday Amber comes from 1-5, on Tuesdays it’s Makenzie from noon-5, each Wednesday is Kendra from 11-4, and then Thursday is Andrea from 8-noon while I’m at MOPs.  So technically Thursday is the only day I really have something planned to do each week.  The other afternoons I find things to keep me busy, like today, sitting at a coffee shop.  I need to run a few errands, get groceries, and then I was planning to go work out too.  Yeah, I know, I said work out.  You’re all shocked, right?  I joined Planet Fitness months ago and have yet to actually step foot into the facility.  I even joined online.  I’m hoping I can actually make myself go later.  Send prayers.

    I’ve been thinking a lot about having these girls come and watch Nora.  I love them all and think each are good with Nora, so no concerns there.  It’s just that I kind of hate having them scheduled each week.  Like this morning, I would have loved to just chill and then maybe run some errands with Nora this afternoon, but since I knew Kendra was coming I had to get up, get ready, get Nora organized, clean up the house a bit, etc.  I guess it forces me to shower everyday!  There is so much I’d love to get done at home though, like clean, or organize the office…  Sometimes I feel like I’m just wasting my days away at coffee shops.  I mean, don’t get me wrong, I love the time away to relax, but I end up feeling guilty.  There is a huge part of me that would prefer Nora go to daycare a couple of hours a week.  Perhaps then I could go back home and accomplish things there that actually need to be done.  But I assume daycare comes with other concerns I’m not even aware of…  And since Nora hasn’t been cleared yet by the immune team at the University, daycare is still out of the question.  I was hoping by her first birthday everything would be figured out and she’d be able to get the rest of her vaccinations.  We shall see.  This Friday we are traveling back to the University to have her IgG checked again.  I want nothing more for that level to be normal.

    Oh, before I forget, I think Nora is finally getting her first tooth at 10 months (7 months corrected).  I keep sticking my fingers in her mouth to feel around and I’m pretty sure there is one just popping through on the bottom.  I tried to look but of course she is much too busy to actually open her mouth long enough for me to see anything.  I never thought I would be so excited about a tooth!  Kids surely change you!