As with a lot of things in life, there are ups and downs. These first few months have been full of them. Some days I feel very hopeful and positive, as if we are bigger then this diagnosis. Other days it's hard to pull my feet out of the muck and take a step forward, the diagnosis is too big for me to carry. Lately my feet have felt fairly stuck.
My pumping days are numbered. My theory is that after nursing my first daughter for 2 1/2 years my body is not fooled by the pump. It's just not the same sensation. But each day I wake up, take my herbs and pump 4-5 times. At this point Freya is getting about half breast milk and half formula, and that's a good day. I know from the core of my being that breast milk is the best for my baby. But I can't help but wonder, as I look at Freya laying next to me while I strain to pump out an ounce and a half, at what point is it not worth it. Quite often, as the pumps are rhythmically pumping away, Freya and I are left just looking at each other and I'm thinking of all the other things we could be doing; snuggling, playing, going for a walk or some physical therapy. The actual time I spend pumping is almost 2 hours a day, and that's not including cleaning the pump parts or mixing the right amount of formula with the breast milk. I just can't help but wonder sometimes if the time would be better spent in a different, more stimulating activity. I didn't get a drop of breast milk and I've turned out ok. Other times I snuggle her little 10 1/2 lb. body and wonder how I could leave her immune system defenseless or cut off the last physical connection between us. So what if it takes me a total of a half an hour to get 1 1/2 oz. of milk, every little bit counts right?
I'm trying a different herb blend and am being more careful about what goes into my body. Sometimes I try to put Freya on my breast, but there's only so many times you can watch your baby make a disgusted face and pull away from you. For now, I'm hanging in there with the pumping. For now, the benefits out weigh the cost, or so I think.
We got the results from her sleep study. That's a whole other issue, and another post.
Saturday, March 31, 2012
Friday, March 16, 2012
Hindsight
When I began this blog I referred to each new week of my pregnancy as small victories. I said they were like small victories because this pregnancy
was fraught with worry. I didn’t worry with my first
pregnancy but everyone told me it was normal, 'pregnancy is a state of worry'.
Around 30 weeks we figured out the baby was breech, and thus began my final worry. We were planning a home birth but the midwives' policy was no breeches and none of the local hospitals would perform a breech vaginally. So for weeks I talked to my baby about getting into position, even made up a song to sing her. I took homeopathics, performed various stunts of inversion acrobatics including an intense yoga position involving my very pregnant body upside down against the wall. We kept a board propped against the couch in the living room so 3 times a day I could lay upside down for 20 minutes. I tried ice on the top of my belly, acupuncture, moxibustion and a trip to the chiropractor. I researched turning a breech baby and found a statistic saying that 3-4% of breeches are from a congenital malformation. I hid this information away, hoping to discard it for good. But as the weeks continued and my baby didn’t turn it crept out more and more.
Around 30 weeks we figured out the baby was breech, and thus began my final worry. We were planning a home birth but the midwives' policy was no breeches and none of the local hospitals would perform a breech vaginally. So for weeks I talked to my baby about getting into position, even made up a song to sing her. I took homeopathics, performed various stunts of inversion acrobatics including an intense yoga position involving my very pregnant body upside down against the wall. We kept a board propped against the couch in the living room so 3 times a day I could lay upside down for 20 minutes. I tried ice on the top of my belly, acupuncture, moxibustion and a trip to the chiropractor. I researched turning a breech baby and found a statistic saying that 3-4% of breeches are from a congenital malformation. I hid this information away, hoping to discard it for good. But as the weeks continued and my baby didn’t turn it crept out more and more.
Even when Freya was born via cesarean and couldn't nurse in the beginning, I let myself be talked into thinking that she was just a bit earlier than we had thought. I believed that she wasn't totally in this world yet and needed some time. I planned a rebirth ceremony and cranial-sacral therapy for her actual due date a few weeks later.
But those first few weeks were terrifying. She was such a quiet, still baby and there were times, as I held her skin-to-skin against my chest, that I could almost feel her slipping away. I would be going about my business (which in the first few weeks of post-cesarean wasn't much) and suddenly Freya would feel distant, almost lighter. I would, probably too roughly, pull her away and speak loudly to her, pleading with her to wake up, please wake up. Often times it would be long, intense moments before she would even stir.
The night of Dia de los Muertos I sat up with Andy for a few hours trying to find a name for her. I had convinced myself that she needed a name to help keep her in this world. We could only come up with a middle, Jude. I fell asleep that night, Baby Jude on my chest, knowing that I needed to see her through this night, that I had to fight for her as I had been fighting for her from the beginning of this pregnancy. Perhaps it was my hormones, but fear is a powerful emotion. The next morning I woke to my baby who had stayed with me through the night, her umbilical cord finally fell off and we named her Freya, after the Viking Goddess.
I felt safer knowing that Freya had a name, but was still afraid that I would, at some random moment, notice that she was no longer with us. These were awful, indescribable feelings. Then one night, about 2 weeks later, my midwife came over and said we needed to talk, that they were concerned. Through my tears, and the thought that I had known this all along, I asked if she thought that Freya wasn't going to make it. The look of surprise told me what I need to know. "No," she said, "if I thought that I wouldn't be going home at night."
And that was enough. My baby was not on the verge of leaving me, and that made anything else seem absolutely bearable. I finally had my baby and could enjoy her. It was months before we got an actual diagnosis and there was more grief. However, as I said in my first blog entry, I couldn't believe what people said about these first few months being the hardest. I saw the future as a nightmare of health issues, shots, behavior problems and doctor visits. Not too mention the emotional turmoil that goes along with all of those. And I am only 5 weeks into the 'first few months are the hardest' phase so I won't act as if I still don't question so much of this. But I have already begun to hope again and can see on the horizon a future of acceptance and understanding.
Perhaps it is that these first few months are spent questioning this experience. The what's, the how's and especially the why's. But on that horizon I can see a time when we get past the questioning and trust in ourselves and this experience. Each day I try to take another step forward.
But those first few weeks were terrifying. She was such a quiet, still baby and there were times, as I held her skin-to-skin against my chest, that I could almost feel her slipping away. I would be going about my business (which in the first few weeks of post-cesarean wasn't much) and suddenly Freya would feel distant, almost lighter. I would, probably too roughly, pull her away and speak loudly to her, pleading with her to wake up, please wake up. Often times it would be long, intense moments before she would even stir.
The night of Dia de los Muertos I sat up with Andy for a few hours trying to find a name for her. I had convinced myself that she needed a name to help keep her in this world. We could only come up with a middle, Jude. I fell asleep that night, Baby Jude on my chest, knowing that I needed to see her through this night, that I had to fight for her as I had been fighting for her from the beginning of this pregnancy. Perhaps it was my hormones, but fear is a powerful emotion. The next morning I woke to my baby who had stayed with me through the night, her umbilical cord finally fell off and we named her Freya, after the Viking Goddess.
I felt safer knowing that Freya had a name, but was still afraid that I would, at some random moment, notice that she was no longer with us. These were awful, indescribable feelings. Then one night, about 2 weeks later, my midwife came over and said we needed to talk, that they were concerned. Through my tears, and the thought that I had known this all along, I asked if she thought that Freya wasn't going to make it. The look of surprise told me what I need to know. "No," she said, "if I thought that I wouldn't be going home at night."
And that was enough. My baby was not on the verge of leaving me, and that made anything else seem absolutely bearable. I finally had my baby and could enjoy her. It was months before we got an actual diagnosis and there was more grief. However, as I said in my first blog entry, I couldn't believe what people said about these first few months being the hardest. I saw the future as a nightmare of health issues, shots, behavior problems and doctor visits. Not too mention the emotional turmoil that goes along with all of those. And I am only 5 weeks into the 'first few months are the hardest' phase so I won't act as if I still don't question so much of this. But I have already begun to hope again and can see on the horizon a future of acceptance and understanding.
Perhaps it is that these first few months are spent questioning this experience. The what's, the how's and especially the why's. But on that horizon I can see a time when we get past the questioning and trust in ourselves and this experience. Each day I try to take another step forward.
Thursday, March 8, 2012
Overwhelmed
We have begun the myriad of doctor's appointments for Freya's PWS. Three days in San Francisco for a total of 2 hours in doctor appointments; long enough for them to tell us it will be 5 months before she can begin the growth hormone treatment. I could go into the details of why we have to wait (approval from insurance) and what hurdles need to be jumped (the necessity of a sleep study) in order for this very effective treatment to happen. But honestly, that is not why I am writing this blog. I am writing this blog because I am frustrated and confused. I feel humbled and overwhelmed navigating these twists and turns of the bureaucracy of Western Medicine. Many parents I am in contact with already have their babies on GH. They are in physical and occupational therapy. They also travel from far and wide to see a special doctor in Florida. Should we be doing more? Should I have thrown a fit when the Regional Center said it would be a month before she could be evaluated for her therapies? Should I have demanded they get her on the GH faster? What can I do?
There is part of me that believes, with our sincere devotion and dedication to our daughter and her needs, we can successfully handle her syndrome. On these days I feel hopeful. But the evidence is there. Growth hormones have a strong, positive affect on people with PW. And the doctors, who agree it is the best treatment, can do no better than 5 months. So today I feel stuck; and confused, worried that I am missing something or not fighting hard enough. Today I question my ability in being a successful advocate for Freya.
But I remind myself Freya is only 4 months old. Once she begins GH treatment she will be getting a shot every night. And, we found out, she will most likely have to wear a mask when she sleeps. For now she is a healthy, happy, albeit small and weak, baby. But she is improving and growing at her pace. She has even begun to laugh. Perhaps it is a blessing that she will not be whisked too quickly into a world of needles and machines.
There is part of me that believes, with our sincere devotion and dedication to our daughter and her needs, we can successfully handle her syndrome. On these days I feel hopeful. But the evidence is there. Growth hormones have a strong, positive affect on people with PW. And the doctors, who agree it is the best treatment, can do no better than 5 months. So today I feel stuck; and confused, worried that I am missing something or not fighting hard enough. Today I question my ability in being a successful advocate for Freya.
But I remind myself Freya is only 4 months old. Once she begins GH treatment she will be getting a shot every night. And, we found out, she will most likely have to wear a mask when she sleeps. For now she is a healthy, happy, albeit small and weak, baby. But she is improving and growing at her pace. She has even begun to laugh. Perhaps it is a blessing that she will not be whisked too quickly into a world of needles and machines.
Thursday, March 1, 2012
Pump, Pump, Feed...
My life these days is centered around pumping and feeding. If I'm not pumping, or feeding, I'm cleaning pump parts or counting time until Freya's next feeding and homeschooling our 7 year old. In some ways it may seem pleasant to have a baby that doesn't cry or fuss. Well, I guess I would say its the consolation prize. My baby doesn't cry and fuss and cause a huge distraction. She doesn't wake up every 15 minutes to squirm and cry for milk. My first one was a bit more like that, and it is hard, very hard. But there is a lot of pressure on a parent who's baby does not eat of her own free will. I set the alarm at night so I can wake up and feed her. The plus side is that I am assured sleep in 4 hours doses. The down side is that occasionally, when I've forgotten to turn the alarm on or turned it off in my sleep, I wake up frantic because it has been 6 hours since she has eaten. I jolt awake to find Freya sleeping peacefully by my side. I rush to get a bottle prepared and warmed as I berate myself for being irresponsible. But I am human. And while a 'normal' 4 month old can (if only we were all so lucky) sleep for 6 hour stretches without eating, it's yet another obstacle to the growth of my already small baby. Thankfully these moments are few and far between, but racked with guilt none the less.
There are times when Freya seems to be hungry and enjoying her bottle, when she sucks it down in 20 minutes. These moments are a blessing. There are times when she is too sleepy and getting her to eat is almost impossible. Sometimes the milk backs up in her throat without notice and she coughs and chokes and can't breathe. These moments are terrifying. Sometimes I struggle to get the last of her bottle into her, only to have her spit it back up. My life is ruled by Freya's feeding schedule, which unfortunately she couldn't care less about. But it's what parents do. We alter our lives for those of our children. We make sacrifices so that they may have the things they need. Our children's needs may seem unbearable at times; the crying, the whining, the struggle to feed. But for every moment when we feel as if we can't continue with this path, can't keep up with these struggles, there are countless other moments when our lives are so enriched by these little people we can't, nor care to, remember what life was like with out them. So, while my time is not my own these days, I look with joy on this being that has entered our lives. We are trying to prepare ourselves for the struggles we will face with her, but all the while revel in the joy and happiness she has and will continue to bring.
There are times when Freya seems to be hungry and enjoying her bottle, when she sucks it down in 20 minutes. These moments are a blessing. There are times when she is too sleepy and getting her to eat is almost impossible. Sometimes the milk backs up in her throat without notice and she coughs and chokes and can't breathe. These moments are terrifying. Sometimes I struggle to get the last of her bottle into her, only to have her spit it back up. My life is ruled by Freya's feeding schedule, which unfortunately she couldn't care less about. But it's what parents do. We alter our lives for those of our children. We make sacrifices so that they may have the things they need. Our children's needs may seem unbearable at times; the crying, the whining, the struggle to feed. But for every moment when we feel as if we can't continue with this path, can't keep up with these struggles, there are countless other moments when our lives are so enriched by these little people we can't, nor care to, remember what life was like with out them. So, while my time is not my own these days, I look with joy on this being that has entered our lives. We are trying to prepare ourselves for the struggles we will face with her, but all the while revel in the joy and happiness she has and will continue to bring.
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