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!