My little 1 lb 4oz 23/3 day micro preemie will be 7 in August. I cannot take it.
She will be going into the 2nd grade this year and time is flying by like nothing.
I turned 30 this past year, Yikes! So many changes in the past few years.
She is still getting services through her school, such as occupational therapy,
physical therapy and speech. She has made TONS of progress and I am so proud.
In the beginning you really have no idea what to expect. I honestly didn't. I didn't know
if I would ever be able to have a conversation with my child, would she understand?
Would she even be able to feed her self, walk, go to school or make friends?
The answer to that is you never will know those answers but with time things change.
I know I always mention I want to keep this blog up every time I post, but I do!
I still want to be there for those going through what I did and those who may have
questions. So PLEASE feel free to reach out, be active on my posts, I will answer!
Showing posts with label premature. Show all posts
Showing posts with label premature. Show all posts
Wednesday, April 25, 2018
Friday, September 21, 2012
6 Month Eye Appointment Check Up
After we left Madison's 6 month check up I was kind of upset. As some of you know or may not know because of how premature Madison was and how long she was on oxygen she developed Retinopathy of Prematurity (ROP)
This is what Wikipedia has to say about it:
Retinopathy of prematurity (ROP), previously known as retrolental fibroplasia (RLF), is an eye disease that affects prematurely-born babies. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but it may lead to blindness in serious cases. As such, all preterm babies are at risk for ROP, and very low birth weight is an additional risk factor. Both oxygen toxicity and relative hypoxia can contribute to the development of ROP.
Normally, maturation of the retina proceeds in-utero, and at term the mature infant has fully vascularized retina. However, in preterm infants, the retina is often not fully vascularized. ROP occurs when the development of the retinal vasculature is arrested and then proceeds abnormally. The key disease element is fibrovascular proliferation. This is growth of abnormal new vessels that may regress, but frequently progresses. Associated with the growth of these new vessels is fibrous tissue (scar tissue) that may contract to cause retinal detachment. Multiple factors can determine whether the disease progresses, including overall health, birth weight, the stage of ROP at initial diagnosis, and the presence or absence of "plus disease". Supplemental oxygen exposure, while a risk factor, is not the main risk factor for development of this disease. Restricting supplemental oxygen use does not necessarily reduce the rate of ROP, and may raise the risk of other hypoxia-related systemic complications.[citation needed]
Other physicians have suggested that supplemental oxygen, specifically oxygen tents given to pre-term infants specifically causes ROP. The hypothesized mechanism involves the degradation and developmental cessation of blood vessels in the presence of excess oxygen. When the excess oxygen environment is removed, the blood vessels begin forming rapidly again and grow into the vitreous humor of the eye from the retina, sometimes leading to blindness.[1] This does not preclude the dangers of hypoxic environments for premature infants.
Patients with ROP are at greater risk for strabismus, glaucoma, cataracts and myopia later in life and should be examined yearly to help prevent and treat these conditions.
So with that said Madison had laser surgery in both her eyes. I was told she may have to wear glasses, everyone in this family has glasses but that's no big deal. We are supposed to go back for another 6 month follow up and I was warned that, that may be the time when she will get glasses. According to the doctor the prescription is "very strong," and there is one type of frame for kids. So I took that as her having coke bottle glasses. That part upset me. He took it as no big deal but to me she sees fine. She looks at everything she gets to the things she wants across the room I don't feel like there is anything wrong with her vision and I don't want to put glasses on my daughter's face until she can tell me whether or not see can see these things or not.
My husband was upset too and was talking about getting a second opinion, I think its a good idea but I just don't get the whole "let me examine your eyes and I can tell you need glasses," deal without a child being able to respond. I understand looking in her eyes and checking out how the vessels in her eyes are but that doesn't state whether she is blind or not. I just hope between now and then Madison will prove him wrong. Either way I don't think he can tell if she can see by just looking at vessels.
This is what Wikipedia has to say about it:
Retinopathy of prematurity (ROP), previously known as retrolental fibroplasia (RLF), is an eye disease that affects prematurely-born babies. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but it may lead to blindness in serious cases. As such, all preterm babies are at risk for ROP, and very low birth weight is an additional risk factor. Both oxygen toxicity and relative hypoxia can contribute to the development of ROP.
Normally, maturation of the retina proceeds in-utero, and at term the mature infant has fully vascularized retina. However, in preterm infants, the retina is often not fully vascularized. ROP occurs when the development of the retinal vasculature is arrested and then proceeds abnormally. The key disease element is fibrovascular proliferation. This is growth of abnormal new vessels that may regress, but frequently progresses. Associated with the growth of these new vessels is fibrous tissue (scar tissue) that may contract to cause retinal detachment. Multiple factors can determine whether the disease progresses, including overall health, birth weight, the stage of ROP at initial diagnosis, and the presence or absence of "plus disease". Supplemental oxygen exposure, while a risk factor, is not the main risk factor for development of this disease. Restricting supplemental oxygen use does not necessarily reduce the rate of ROP, and may raise the risk of other hypoxia-related systemic complications.[citation needed]
Other physicians have suggested that supplemental oxygen, specifically oxygen tents given to pre-term infants specifically causes ROP. The hypothesized mechanism involves the degradation and developmental cessation of blood vessels in the presence of excess oxygen. When the excess oxygen environment is removed, the blood vessels begin forming rapidly again and grow into the vitreous humor of the eye from the retina, sometimes leading to blindness.[1] This does not preclude the dangers of hypoxic environments for premature infants.
Patients with ROP are at greater risk for strabismus, glaucoma, cataracts and myopia later in life and should be examined yearly to help prevent and treat these conditions.
So with that said Madison had laser surgery in both her eyes. I was told she may have to wear glasses, everyone in this family has glasses but that's no big deal. We are supposed to go back for another 6 month follow up and I was warned that, that may be the time when she will get glasses. According to the doctor the prescription is "very strong," and there is one type of frame for kids. So I took that as her having coke bottle glasses. That part upset me. He took it as no big deal but to me she sees fine. She looks at everything she gets to the things she wants across the room I don't feel like there is anything wrong with her vision and I don't want to put glasses on my daughter's face until she can tell me whether or not see can see these things or not.
My husband was upset too and was talking about getting a second opinion, I think its a good idea but I just don't get the whole "let me examine your eyes and I can tell you need glasses," deal without a child being able to respond. I understand looking in her eyes and checking out how the vessels in her eyes are but that doesn't state whether she is blind or not. I just hope between now and then Madison will prove him wrong. Either way I don't think he can tell if she can see by just looking at vessels.
Sunday, August 19, 2012
Madison
One year ago today my life changed. Decisions, suggestions and a bunch of information was thrown at me and it meant nothing. At around 7PM I was brought into surgery, by choice to try and give my unborn daughter a better shot at like. At 7:21PM Madison was delivered by c section. I wasn't listening for her first cry because I knew it wasn't going to happen she was too premature. What I did listen for was her stats and most importantly her heartrate and what they could stabilized it at before going to the NICU. Once I heard 160bpm I knew she would be okay. She was born 1lb 3ozs and only 10 1/2 inches long,. She's had 4 surgeries and life threatening infections that could have killed her. She spent the first four months of her life in the NICU 127 days. Today she is over 15lbs and an extremely loud and energetic ball of fire. I couldn't have imagined a better outcome for her. She has surprised us and her doctors. She is truly a miracle. So on this day we celebrate her life and her struggles because without her I don't know where I would be. Happy First Birthday Madison!
Sunday, January 22, 2012
94.7 WMAS
The radio interview went awesome. The only thing we didn't talk about well not talk about but the only thing not recorded was about going through infertility treatments and the overall struggle with this pregnancy. Important points were made. Dexter was talked about often as well as Madison and it was known that they were both very premature and that Dexter did sacrifice himself for his sister. It was a very cool experience. I was never behind a Mic at a radiostation before. We took some pictures and I asked for a copy of the montage when it is all done and so I'm waiting for that email. The actual live radiothon is next month and coming up quick. I'm glad I had the chance to outwardly thank the nurses, doctors, and the NICU team overall.
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