Health Updates

Sam's iron level was rechecked a week or so ago and his level is now okay, so we were able to stop the iron drops he's been on for the past three months.  I am extremely happy about this because I hate how they make his teeth grayish looking.  His teeth should be able to be back to normal soon.  I do find it odd that both Sam and Anna have now had to be on iron supplements at some point for low iron levels because I think they actually have pretty high iron diets and I've never heard of any one else needing to supplement with them.  I'm hopeful that we won't have to revisit them again!  The gray teeth are awful!

Anna had a pediatric cardiologist appointment yesterday to recheck the VSD heart murmur she's had since birth.  Her last cardiologist appointment was 18 months ago.  I wasn't worried one bit because she doesn't seem affected by it at all.  It's nice to have a same-age toddler right next to her to be able to instantly compare activity levels and see what "normal" should look like.  Her doctor wasn't concerned at all either after checking her over although the VSD is still there. (She said that it could potentially close at any point on it's own, or Anna could have the heart murmur for the rest of her life.)  We'll go back for another pediatric cardiologist appointment in 2 years, but nothing until then!

CHD Awareness Week

CHD (congenital heart defects) Awareness Week is this week: February 7-14, 2011.

As a mother to a child with congenital heart defects this is near and dear to my heart (and Anna's, literally). I will always remember hearing the words "your daughter has holes in her heart" when she was only a few hours old and how scared those words made me feel. We were very lucky though- although not detected on the numerous level 2 ultrasounds we received during my high risk multiple pregnancy (because of the way blood flows differently through the chambers before birth), Anna's ASD and VSD heart murmurs were detected very early before we were released from the hospital. As a result, we were armed with the knowledge of what to play close attention to- any difficulties breathing, working hard to drink, tiring easily, etc. and Anna was closely monitored by a pediatric cardiologist during those first months until it was determined her CHDs would probably not pose any problems. She does not need to go back to see the pediatric cardiologist again until she is 18 months old.

The problem is that although congenital heart defects are the number-one birth defect and the leading cause of birth defect-related deaths worldwide, awareness is low. Pregnant women are not routinely tested and newborns are not routinely screened for CHDs. Consequently, they often go undetected until sometime after birth. In some cases, they are detected too late. CHDs kill twice as many children as childhood cancer. One in every 125 babies is born with a CHD every year in the United States alone. If you are not aware of Cora's Story, I strongly urge you to visit her site. Cora died suddenly and unexpectedly in her mother's arms of an undetected CHD while breastfeeding. She was only one week old. I can't explain adequately how much her story has touched me. I think of all the things Anna does and is learning and I think about how Cora will never get to do those things, and how Cora's mother will never get to see her daughter grow up like I will watch Anna grow up.

This is something every mother, father or expecting parent should read about CHD. Share it with your friends and family. Help spread awareness of congenital heart defects.

I'm Gonna Be Gray By Age 35

Good Lord, what a week so far.

I stayed home with Anna yesterday because of her fever. She napped a lot (4 naps with over 6 hours of total nap sleep) but ate very little compared to her usual amount lately. During the day I had noticed that her soft spot was kind of more pronounced than usual- "bulging" out, even. I called our pedi's office just to see if that was something I should be concerned about. I was told somewhat dismissively "maybe I was just noticing it more than usual because she was sick" and that maybe she was "over-hydrated" (WTF- I had already told the nurse that she wasn't drinking as much as usual AND that she had had 6 diarrhea diapers during the day- there's NO WAY she could have been "over-hydrated" and I didn't even know that it was possible to be "over-hydrated." I ended up googling bulging fontanelle (why do I always consult Dr. Google even though I KNOW I'm going to get the worst-case-scenario??) and meningitis came up. Her other characteristics- fever, diarrhea, stiff neck (probably more related to her torticollis but aggravated by not feeling well) plus the bulging fontanelle were all listed as symptoms of meningitis. It was too late to call back by then, but we had been told to bring her in if she had the fever for 3 days anyway, so we waited for the morning to see how she was doing. I really didn't think it was something super serious, or I would have brought her to the ER. I thought we would be okay at least until morning.

Anna didn't have a fever this morning, so we brought her to daycare. Our daycare provider emailed about 10 am and said she had a fever and asked if she could give her generic Tylenol. Since we had been told to bring Anna in to be checked over if she had the fever for 3 days, my husband made an appointment to bring her in as soon as we could. (I had our first school field trip today, so it would have been really difficult to be gone from work myself. My husband has a lot more flexibility at his job than I do.)

My mommy instinct was warranted, because our pedi told my husband she had never seen a soft spot protruding that much on an infant as old as Anna before, and ordered a CT scan and bloodwork to try and figure out what was going on. Although Anna was hungry, they wouldn't let my husband feed her in case the results from the bloodwork came back bacterial and she would need a spinal tap. Good lord. She had only napped for 15 minutes all day on top of all that. I called over an hour after the appointment because I had not heard anything from him yet (I figured he would have left by then), and this is what I heard (my baby screaming in the background) "they are going to do a CT scan to rule anything out- oh, I have to go the doctor just walked in." Click. I had to wait over an hour to find out anything else. Way to make a momma want to drop everything and run to her car to get to her baby as fast as possible! BUT, as a teacher, it's not like I can leave my class high and dry with no adult to watch 16 5-year-olds. Plus, my husband was there, what was I going to do that he was not doing? So I stayed and waited not-so-patiently for more news.

The short version is that the bloodwork came back showing a viral infection, so she most definitely does not have bacterial meningitis (the bad, bad kind). And no spinal tap was needed, thank goodness. She finally got to drink her bottle and was in relatively better spirits.

She may have a mild case of viral meningitis, but neither the neurologist nor our pediatrician thinks that is the kind of viral infection she has (they don't know what kind though). She officially has a "begnin enlargement of the subarachnoid space"- basically extra fluid in the tissue layer of her head (NOT her brain and not in the layer that has veins, both of which would be bad) that is pushing her soft spot up. 16% of infants apparently have this, more commonly boys. They will be monitoring her head circumference closely as she grows and that's about it. It shouldn't cause any issues or interfere with her development.

Anna also happens to have her next cardiologist appointment tomorrow to check on her VSD and ASD heart murmurs. The plan is to get a EKG to see if they have gotten smaller. I anticipate good news, because the last couple of times her heart has been listened to, our pedi said it sounds like it has gotten smaller.

Life is certainly never dull around here! For a relatively "healthy" child, she sure has seen a lot of doctors! Besides her pediatrician she has seen a cardiologist for her heart murmur, a gastroenterologist for her GERD, a physical therapist for her torticollis, a chiropractor, and now a neurologist. I'm 31 and have never had a EKG or a CT scan. Anna's less than 7 months old and she's had both. I'm really ready for this to calm down a little around here and have a normal couple of weeks. I'm not sure I know what normal is anymore!

Two Weeks Old!

Happy 2 week birthday, Sam and Anna!

Yesterday we trekked to the pediatric cardiologist's appointment with both babies. It took an hour long drive to get there. It is not fun to drive that far with two 2-week-old babies, hang out at the doctor's for a few hours, then return home after another hour long drive. That was pretty much our day, and I was exhausted by the time we got home. I think the change in our routine threw off the babies routine too, because last night was not a good sleep night around here. Some days/nights are better than others- so I'm hoping for a good one tonight!

The good news from the pediatric cardio doc was that Anna's VSD heart murmur sounds very high pitched, which is a great thing. She showed us on a diagram where the hole is located. According to her opinion, she thinks it will be very unlikely that Anna will ever need medication or surgery (but is isn't completely ruled out). She thinks it is likely to close on its own, or may just always be there throughout her life. We go back for a monitoring appointment six weeks from now. If things look good at that appointment, we won't have to go back until Anna is 6 months old, and then if things still look great- we don't go back until Anna is 3. That would be the best case scenario. For the next six weeks though, we just need to keep a close eye to make sure her lips aren't turning blue, watch how she is eating- to make sure she isn't laboring while sucking- and make sure she is gaining weight. Anna got weighed yesterday and was 5 lbs 9 oz- up 9 oz from last week, so that's a great sign. We've been noticing she's eating with more vigor lately, too. While we were watching Man vs. Food, Anna decided to have her own food challenge, and downed 4 oz (!) of formula in one sitting. Sam and Anna have been consistently drinking 2-3 oz each time lately, so this is the first 4 oz feeding we've had.

Or it could be that I have a very competitive little girl on my hands (taking after her momma?) and wants to close in on her big brother Sam. At Sam's two-week weight check today, he weighed 6 lbs 4 oz, up 13 oz since last week. According to some info I have, they should gain 1/2 oz to 1 oz a day on average right now. Way to go Sam! That weight gain makes sense because you can tell that both babies' faces are filling in a little bit. I wonder how long it will be before newborn-sized clothes won't look so huge on them and how much longer they will wear newborn-sized diapers.

We also took the babies on their first store trip today. A benefit to formula feeding that I didn't even think of until the decision was made: I get to drink alcohol again. During the 3 + years of TTC, I very sparingly drank, "just in case." Then I completely stopped a few months before the IVF because I wanted to be in the best physical condition for it. And of course, I haven't had a thing to drink in over 9 months. So since we live within walking distance to a grocery store, we went for a walk to pick up some tequila for margaritas to go with our Mexican dinner. Is it wrong that their first trip to a store was to buy alcohol? Eh- I think not. I also got my first real experience with curious strangers- we were in and out of the store in a matter of minutes, and yet there were several people that made comments and wanted to look. I know this is only the beginning of the rest of our lives of being a twin-sideshow attraction. It was kind of fun today, though. I do have to say that it was the best tasting margarita I've had in a long, long time.

More baby pictures:

This is a good example of one of Sam's sleeping faces with raised eyebrows

Anna is such a observer, she often sleeps with her eyes partially open- I think because she still wants to see what's going on!