Health scare

Well I don't know how much time I have to sit here and type before Nina wakes up, but I will try to type fast!
About a week after Nina was born my doctors office called me to inform me that some of her blood work came back with an abnormal screen.  She was testing positive for something called C50H, otherwise known as Holocarboxylase Synthetase Deficiency (Organic Acid Disorder). 

Organic acid disorders like holocarboxylase synthetase deficiency (HSD) are genetic disorders that are found in a few babies born each year. Some of these disorders can be identified when compounds called acyl carnitines are measured in a baby’s blood. When a baby has an organic acid disorder, he or she cannot rid the blood of certain waste products that occur during the metabolism of protein. These waste products build up in the baby’s blood and can cause the baby to have feeding problems, seizures or even go into a coma.

Um...ok...freak out much?  My sister was sitting on the couch with me when I got the news and I started crying.  Here I was looking down at my perfect little baby having just found out the possibility of her not being perfect.  I was told to immediately call the nurse at the hospital and set up an appointment for the next morning to have repeat blood work done to confirm the diagnosis.  The crazy thing about this deficiency is that it's only tested in a few provinces, Ontario being one of them, and it's only found in 1:50000 babies!  What the?

Anyway, the next morning Nina and I went in for blood and urine testing (her and I both) and we met with a Genetic Counselor so she could explain everything to us and get a little background info about our families.  The hard part was that I couldn't tell Sean anything about this because he had his exams that week and I didn't want to distract him.  It's funny because we talk about this all the time, what if he was in surgery or in an exam and I had some important urgent news...do I tell him?  I felt like I was being tested.  Another hard part about waiting to hear the results of the blood work was the fact that I had to feed Nina every 2-3 hours, even through the night because if she had this disorder, her body can't fast or it runs the risk of shutting down and going into a coma.  I thought I was going to go crazy waking up that much during the night, even during the day it felt like it was a feeding frenzy.  It's stressful enough to breast feed a newborn and deal with the normal things that come with that, but being constantly worried about her as well and waking her up to eat and worrying at night was almost too much to handle.  I had an emergency protocol that I kept in my wallet in case she got sick because you have to bring them into the emerge right away in case they won't eat or have trouble eating!  I was a basket case and fell apart like every other hour. 

We were told we'd hear back from them on the following Friday and so we were totally anxious everytime the phone rang in the days leading up to that.  Friday morning the nurse called and gave us some great news!  The tests on urine and blood were showing up negative now and so they thought the first test was probably a false positive.  The only thing was that her C2 levels were still a little bit high and so they wanted to keep her chart around for when the Geneticist comes in from Ottawa next week to check it over and just make sure she is fine.  They weren't really worried about that like they were before so that made me feel better, and they gave the okay to let her sleep a little longer at night!  I've never prayed so much in my life for something!  We were preparing our minds for both ways but obviously hoping that she was fine. 

I'm so grateful for healthy kids.  Just the slightest difference from what I'm used to when it comes to health issues is so stressful, my heart goes out to some of my friends who have to go through that on a daily basis, I don't know how they deal with it...lots of prayer is my guess!

Now things are going great.  She is such a good baby, sleeping is getting a little better at night, last night she slept for 6 hours I think so that was nice!  We love having her around and all the kids love her so much! 

Lotti is having a hard time with it.  Not that she directs any of her anger at the baby, more like she directs it at me!  She falls apart at the slightest little thing and love to say "No mommy!"  I'm really starting to hate that word.  I have found though that if I fight back it gets worse...so when I can redirect and help her through what she is feeling it turns out better.  This morning she wouldn't pick up her clothes and put them in the hamper so I threatened no lunch and she still wouldn't.  After I closed her in her room and she started falling apart I realized she wanted to try again amidst her tantrum so I went back inside and allowed her to do it, which she promptly did.  We went from an almost huge meltdown to her coming downstairs and has been happy every since.  I guess it depends on my level of patience that day.  Nina has been sleeping in her carseat since we got back from the doctor this morning so its allowed me to do laundry and tidy the house, helping me to feel better too!

Some more good news around here and something we've been praying for for a long time has happened!  We got our interview date in Montreal for Sean and the kids to get their visas to move to the US.  It's happening on June 20, just a few days before we were planning to be in North Carolina for our family reunion so it worked out perfectly!  Next weekend we go up to Montreal for our medicals.  Everybody needs to get checked out fully before we have our interview in June.  The girls have been updated wtih their vaccines yesterday and today, and the rest of us are good to go!  Now we are in the midst of choosing a moving company and we're almost ready!  I feel like the time is going by really fast now, I'm so glad my Mom is coming back to help me pack!  Sean is busy back to studying for his last and final exam on June 11 so he's gone a lot...can't wait for that to be done!

Well I need to wake up that baby and feed her if I want her to be tired tonight...she has taken up crying in the evening between the hours of 7-10 usually so tonight I"m trying some gripe water...it seemed to work with all the other kids!  Those little tummies just get so gassy! She loves to cuddle though, she can be going ballistic in her carseat and you pick her up and she nuzzles her little face into your neck and just sits there.  I love it!

L