Well friends, we're going on a second adventure. Baby #2 is baking in my baby maker. I am 16 weeks pregnant. Through Kaiser they said I qualified for more prenatal appointments based on my initial phone interview after conceiving. I had a feeling it was in regards to genetics. I was right. I have already had a genetic appointment but since there is no way to formally confirm or deny that Sarah has CPT II, we do not know if we are carriers or if the second child could have CPT II. Basically all the genetic doctor did was add the information about possible CPT II onto my chart because the only mention was in Sarah's medical records. She also requested 3 extra blood tests to be done throughout my pregnancy to check my liver because she said HELP Syndrome is possibly connected with women carrying babies with CPT. I wasn't able to find any proof of this connection during my little Google search but I figured a few extra blood tests won't hurt.
I'm going into this pregnancy way more grounded in the reality that anything can happen. I have no control over what happens with this little life inside me (Ok, I can take vitamins and not eat junk but, ultimately, there is no control). This understanding has made me less fearful. I'm just letting it go and we'll see what happens.
Sunday, December 19, 2010
Tuesday, August 17, 2010
A Can of Worms
Sarah turned 2 in July. Her last blood test was about a month or two after her first birthday.
Jonathan and I have discussed that we should call the metabolic clinic and get a blood test done on Sarah to see what it shows about her carnitine levels.
We decided a few weeks ago.
I don't really want to.
That's why I haven't.
I'm afraid to start this drama again, the unknown and no way of really knowing.
What's the saying? What you don't know, won't kill you.
Could it kill my kid though?
Ok. I guess I'll call.
Jonathan and I have discussed that we should call the metabolic clinic and get a blood test done on Sarah to see what it shows about her carnitine levels.
We decided a few weeks ago.
I don't really want to.
That's why I haven't.
I'm afraid to start this drama again, the unknown and no way of really knowing.
What's the saying? What you don't know, won't kill you.
Could it kill my kid though?
Ok. I guess I'll call.
Monday, November 23, 2009
Thankful
Well, I can now honestly say that I am thankful for how I developed as a person and mother because of our whole journey with Sarah's NBS and CPT II scare. It didn't seem to hinder or harm Sarah in any way. I didn't enjoy the extra worries and less sleep that occured. I wouldn't wish this journey upon anyone, but I am thankful for how much stronger it has made my faith and the bond between my husband and me.
Wednesday, October 14, 2009
Sarah is Smart (this isn't meant in a bragging way)
A few nights ago, as I was praying over Sarah, I realized one of my deep fears through all of the whole CPT II possibility and treatment. My fear was that she wouldn't develop properly because she wasn't getting the fats she needed. Basically, I was afraid that she wouldn't be as smart as she could be or that her brain wouldn't develop correctly. (That's why I was trying to find ways to be allowed to feed her avocado. That was me trying to control things.)
During our night night routine prayer, I was thanking God for how smart Sarah is and for the joy she brings to our lives and I was overcome with emotion as I realized that God had answered my prayers. My prayer was that God would keep her safe while we treated her and that she would develop normally.
Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5-6
During our night night routine prayer, I was thanking God for how smart Sarah is and for the joy she brings to our lives and I was overcome with emotion as I realized that God had answered my prayers. My prayer was that God would keep her safe while we treated her and that she would develop normally.
Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5-6
Sunday, September 13, 2009
Breastfeeding
The time has come to wean Sarah off breastfeeding. This is actually rather abrupt due to the requirement of myself needing to start medication to kill tuberculosis (it's currently dormant so I'm not contageous). Jonathan reminded me of some of the breasfeeding ups and downs we've had during these last 13 months or so. I realized I hadn't documented any of my breastfeeding woes and successes.
I did mention that after Sarah was born she seemed to latch on fine but that due to jaundice there were expectations that Sarah would feed often and quickly and she just didn't seem to want to be on that schedule. During our stay in the hospital the three days after she was born my focus was feeding Sarah. She was in the NICU so I was unable to practice changing her diapers, putting her to sleep, soothing her when/if she was upset, etc.
When we brought Sarah home, that first night was long (it's embarassingly comical now). I was basically irrational and super paranoid of harming her. Everytime I tried to put her down while she was sleeping, she would wake up. I ended up sitting in our recliner holding her the whole night. I wouldn't let myself go to sleep because of all the warnings that you could smother/kill your child if you sleep with them. I realized that in the NICU I never got to practice swaddling her and putting her to sleep because the nurses did that. Sarah always seemed more than willing to sleep in her little warming bed in the NICU. I decided that because I was having no luck putting her down to sleep I would just stay awake until the morning while holding my sleeping baby and then I would have my in-laws watch her while I slept. During this time the easiest thing was the breastfeeding. My milk seemed to have come in and I realized this was the only thing I practiced while in the hospital with her.
When she was a few weeks old, the metabolic doctors basically said my breastmilk contains the fat that could (in layman's terms) poison her cells and cause her to stop functoning and die if she has the disorder that she was flagged as possbly having by the NBS. I was told to stop breastfeeding and feed her the elixir. The elixir included some long-chain fats because the human brain requires it for development. Instead of using formula in the elixir I pumped, or expressed, my milk so as to keep my milk supply flowing because I was determined to breastfeed and I wanted to be able to still breastfeed if Sarah's NBS was a false-positive. I stored up lots of breastmilk in those days. Our freezer was stuffed with breastmilk (an overstatement, but it felt that way when the occasional solid bag of breastmilk would fall out on us when we opened the freezer door).
I did mention that after Sarah was born she seemed to latch on fine but that due to jaundice there were expectations that Sarah would feed often and quickly and she just didn't seem to want to be on that schedule. During our stay in the hospital the three days after she was born my focus was feeding Sarah. She was in the NICU so I was unable to practice changing her diapers, putting her to sleep, soothing her when/if she was upset, etc.
When we brought Sarah home, that first night was long (it's embarassingly comical now). I was basically irrational and super paranoid of harming her. Everytime I tried to put her down while she was sleeping, she would wake up. I ended up sitting in our recliner holding her the whole night. I wouldn't let myself go to sleep because of all the warnings that you could smother/kill your child if you sleep with them. I realized that in the NICU I never got to practice swaddling her and putting her to sleep because the nurses did that. Sarah always seemed more than willing to sleep in her little warming bed in the NICU. I decided that because I was having no luck putting her down to sleep I would just stay awake until the morning while holding my sleeping baby and then I would have my in-laws watch her while I slept. During this time the easiest thing was the breastfeeding. My milk seemed to have come in and I realized this was the only thing I practiced while in the hospital with her.
When she was a few weeks old, the metabolic doctors basically said my breastmilk contains the fat that could (in layman's terms) poison her cells and cause her to stop functoning and die if she has the disorder that she was flagged as possbly having by the NBS. I was told to stop breastfeeding and feed her the elixir. The elixir included some long-chain fats because the human brain requires it for development. Instead of using formula in the elixir I pumped, or expressed, my milk so as to keep my milk supply flowing because I was determined to breastfeed and I wanted to be able to still breastfeed if Sarah's NBS was a false-positive. I stored up lots of breastmilk in those days. Our freezer was stuffed with breastmilk (an overstatement, but it felt that way when the occasional solid bag of breastmilk would fall out on us when we opened the freezer door).
It was during this time that I had some emotional breakdowns because at that point breastfeeding was my most confident area of parenting. That was the thing I had down, and I felt like I was being robbed of it. I remember in particular watching the "First 5" video on basic infant care that was given to us when we left the hospital. Phylicia Rashad (the mom from the Cosby show) was on the video talking about the benefits of breastfeeding and how breastmilk was the best thing for your baby - I broke down because of the thought that my breastmilk could kill Sarah and it wasn't the best thing for her.
There was another time when Sarah was upset and I knew that breastfeeding her would calm her down, but I knew that I wasn't supposed to. It was during the time when I was supposed to alternate between breastfeeding and bottle feeding her elixir. I can't remember exactly what the issue was but I was extremely upset and it ended with Jonathan just talking me into breastfeeding Sarah and it calmed both of us, Sarah and me, down. I think it had to do with me once again fearing that by breastfeeding her, it could kill her, but feeling that breastfeeding was exactly what I was supposed to be doing.
Due to the requirement that Sarah needed to eat every three hours and, later in her first year of life, every five hours, there were some stressful experiences when she just wasn't wanting to eat and so I would fight with her to eat. The "fighting" looked like me basically trying to get my boob in her mouth and coaxing her to suck all the while she is flailing her limbs and turning her head away from the food source. Those times usually ended with me giving up and figuring that she had enough energy to survive a little bit longer and I would just be aware that at the first sign of hunger she needed to be fed. There were other times when she would bite me and so the breastfeeding session would end prematurely in order to teach her that biting her food source was unacceptable.
Through many of these situations I learned the importance of handing over my anxiety to God and asking for peace unless I needed to be worried. My trust in God increased greatly during this time. I learned that I had little control.
Our last breastfeeding sessions took place after Jonathan and I confidently felt that Sarah didn't have CPT II so I was feeding on demand (as opposed to scheduled feedings). The last two days included about 4-6 relaxing and beautiful times of breastfeeding. Our routine included Sarah twirling my hair in her fingers while we looked at each other, and often she would fall asleep. I've heard some people talk about breastfeeding as though they LOVED it and found it extremely spiritual, I am not one of those people but I enjoyed that it was something special that Sarah and I shared together and it connected us.
There was another time when Sarah was upset and I knew that breastfeeding her would calm her down, but I knew that I wasn't supposed to. It was during the time when I was supposed to alternate between breastfeeding and bottle feeding her elixir. I can't remember exactly what the issue was but I was extremely upset and it ended with Jonathan just talking me into breastfeeding Sarah and it calmed both of us, Sarah and me, down. I think it had to do with me once again fearing that by breastfeeding her, it could kill her, but feeling that breastfeeding was exactly what I was supposed to be doing.
Due to the requirement that Sarah needed to eat every three hours and, later in her first year of life, every five hours, there were some stressful experiences when she just wasn't wanting to eat and so I would fight with her to eat. The "fighting" looked like me basically trying to get my boob in her mouth and coaxing her to suck all the while she is flailing her limbs and turning her head away from the food source. Those times usually ended with me giving up and figuring that she had enough energy to survive a little bit longer and I would just be aware that at the first sign of hunger she needed to be fed. There were other times when she would bite me and so the breastfeeding session would end prematurely in order to teach her that biting her food source was unacceptable.
Through many of these situations I learned the importance of handing over my anxiety to God and asking for peace unless I needed to be worried. My trust in God increased greatly during this time. I learned that I had little control.
Our last breastfeeding sessions took place after Jonathan and I confidently felt that Sarah didn't have CPT II so I was feeding on demand (as opposed to scheduled feedings). The last two days included about 4-6 relaxing and beautiful times of breastfeeding. Our routine included Sarah twirling my hair in her fingers while we looked at each other, and often she would fall asleep. I've heard some people talk about breastfeeding as though they LOVED it and found it extremely spiritual, I am not one of those people but I enjoyed that it was something special that Sarah and I shared together and it connected us.
What's Different Now?
The process of taking Sarah off treatment has been easy in some ways and in other ways it required adjusting our schedule.
Allowing her to sleep through the night has influenced the time she wakes up and her nap schedule. When I would feed her during the night, she would usually sleep-drink her 2am bottle and 7am bottle and then sleep until 9 or 9:30am. Now she is waking anytime between 6:30 and 8:30am. She is also taking two longer naps during the day.
Stopping the carnitine was easy. Sarah quite enjoyed the carnitine as she got older. She was a pro at taking it with her bottles. I regret not documenting it on video. I did try to take some pictures of her one day when she was sucking on her carnitine syringe.
I've noticed her urine smells differently now. I always thought her urine smelled weird, not fishy like some people complain of when they are taking carnitine supplements but it was distinct. Now it smells less distinct.
She seems to be adjusting fine to the whole milk mixed with her Lipistart. At first she was drinking less of her bottles but now she is drinking as much as usual.
Allowing her to sleep through the night has influenced the time she wakes up and her nap schedule. When I would feed her during the night, she would usually sleep-drink her 2am bottle and 7am bottle and then sleep until 9 or 9:30am. Now she is waking anytime between 6:30 and 8:30am. She is also taking two longer naps during the day.
Stopping the carnitine was easy. Sarah quite enjoyed the carnitine as she got older. She was a pro at taking it with her bottles. I regret not documenting it on video. I did try to take some pictures of her one day when she was sucking on her carnitine syringe.
I've noticed her urine smells differently now. I always thought her urine smelled weird, not fishy like some people complain of when they are taking carnitine supplements but it was distinct. Now it smells less distinct.
She seems to be adjusting fine to the whole milk mixed with her Lipistart. At first she was drinking less of her bottles but now she is drinking as much as usual.
Take Care of Ourselves Also
During all this time of caring and focusing on Sarah, we (my husband and I) apparently were unaware of our own health issues.
According to a doctor, my chest x-ray showed that I had tuberculosis (TB). It's dormant now but I had it in the past. Considering I was a teacher before having Sarah, I got TB tests every few years. Four years ago, my TB test was negative. So, within the last four years, I had TB. I don't remember ever being very ill in those last 4 years. The other weird thing is that none of my family members that have been tested have/had it. Sarah and Jonathan tested negative. I am confused as to how I could have TB and Jonathan didn't get it, but I am taking the medication for the next nine months even though it doesn't make sense.
Jonathan apparently has some kidney issues that the doctors can't figure out as of right now.
Family and friends have joked that we were so focused on caring for Sarah that we forgot to take care of ourselves.
One thing all of this has confirmed is to never go into a doctor's appointment thinking everything is OK. Go into appointments knowing anything is possible, hopefully it's OK.
According to a doctor, my chest x-ray showed that I had tuberculosis (TB). It's dormant now but I had it in the past. Considering I was a teacher before having Sarah, I got TB tests every few years. Four years ago, my TB test was negative. So, within the last four years, I had TB. I don't remember ever being very ill in those last 4 years. The other weird thing is that none of my family members that have been tested have/had it. Sarah and Jonathan tested negative. I am confused as to how I could have TB and Jonathan didn't get it, but I am taking the medication for the next nine months even though it doesn't make sense.
Jonathan apparently has some kidney issues that the doctors can't figure out as of right now.
Family and friends have joked that we were so focused on caring for Sarah that we forgot to take care of ourselves.
One thing all of this has confirmed is to never go into a doctor's appointment thinking everything is OK. Go into appointments knowing anything is possible, hopefully it's OK.
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