So we slept last night......I woke up this morning thinking YAY!! no vomiting during the night. This is huge for us as Madilyn is on a continuous pump feed through her tube at night and ever since the virus hit her feeding tolerance is way low. There is lots of throwing up....and lots of laundry. Then I realized that at some point during the night there was a throw-up and both grandpa and I slept right through it......this makes me feel like I failed her but occasionally the exhaustion takes over. We used to feed her every 3 hours during the day and they were 80ml (2.7 ounces) but since she got sick we have resorted to feeding every hour to hour and a half...the feeds are only 30-40 ml now (1-1.35 ounces) and we pray that the majority of them stay down.....she is up to 12lbs 10ounces so it's worth it. I never thought my days would revolve around hourly feedings but they do. They make you realize how precious a minute really is....some days it's a chore to make it to the shower much less actually accomplish anything at all around the house. It makes me more and more thankful that she's such a happy baby. It's hard to have a bad day no matter how exhausted you are when you wake up to her smiles and coo's, when you simply wash her face or change her diaper and she's quick to give kisses and smiles.
Madilyn sleeps in a playpen approximately 12inches away from my side of the bed.....she has a crib in my daughter's room but it's not possible to put her in another room and probably won't be for a very long time. We have a video monitor that we can use but rarely do because now that I am older I realize how quickly something bad can happen........2 seconds too long in reacting to a throw-up and she could drown in it or inhale it into her lungs.....every second counts. We no longer use a bottle either, ever since Madilyn had strep throat at Christmas time she would clamp her mouth shut and if you got the bottle in she would gag..thankfully the speech therapist in Milwaukee told us to get rid of it and focus on getting her to use a cup instead. It took a little bit of the struggles out of our daily routine and for that I am very thankful. Getting her to take liquids by mouth is vital to ever getting rid of the feeding tube/pump.........that is nowhere in our near future and we are ok with that, as long as she's growing that's what matters. She does let you feed her with a spoon and absolutely loves mashed potatoes and mac n cheese.....and she ate her first frosted cheerio on Saturday night which gave me great joy. I started out rubbing it on her lips cause she wouldn't open her mouth for me......once she licked her lips then she was willing to lick the cheerio and the next thing you know she was actually chewing on it. It was so much fun to see her doing that..........it was a HUGE step in the right direction for us. We use the cheerios in her little booster seat to encourage her to sit on her butt (which she hates) and to help with hand/eye coordination........she can pick them up with her fingers and proceeds to smile and throw them all over the floor which my dogs love.....my goal is that within 6 months or so she'll be putting them into her own mouth. Hopefully the glasses will help with that......I hope the glasses make a huge difference with a lot of things.........maybe I hope too much but only time will tell, in the mean time...I hope..:)
Monday, February 25, 2013
Sunday, February 24, 2013
Specialist/Eye Doc appointments
We were referred to a pediatric ophthalmologist since Madilyn has maintained vision in her right eye for so long (she is blind in her left eye)...........we saw Dr. Mark Ruttum from Children's Hospital on February 14th. He is putting the peanugga into glasses.....she is severely near-sighted in her right eye so he is hoping the glasses with widen her range of vision. Her range of vision currently is only a few inches from her face otherwise it's just blurry. We are hoping the glasses make a big difference and that they will in return help with the sitting and hand/eye coordination. I put a post on facebook about her insurance not covering them and we have some amazing support in our community because a few people have sent donations to help pay for them. My husband thought it was funny cause every time someone else made a comment about helping I cried.....I never used to cry much...not until Madilyn came along. Now, I cry all the time..usually happy tears though, so that's all right.
The Special Needs evaluation was on February 15th in Milwaukee. We met with the doc, physical, occupational and speech therapy. They therapists all evaluated Madilyn and placed as follows:
Cognitive (play skills): 4 months
Gross Motor: 4 months
Fine Motor: 5 months
Speech (receptive): 7 months
Speech (expressive): 8 months
then the doctor came in to talk to us..........................she explained that they were shocked after the last evaluation (last June) that Madilyn could do anything at all. They expected her to be almost vegetative because she wasn't being properly nourished or worked with........they called it "unintentional neglect". They also told us the Madilyn is now labeled as severely developmentally delayed and that she wasn't born this way, she was made this way because she spent the first 11 months of her life on her back and not being worked with. While this was not shocking at all it was devastating to hear. I always hoped that no doctor would ever confirm my worst fears and she did. On a good note she said we can overcome some of it...it'll just be 5 times the work............so we work........and she still hates the butt........so I sing...
The Special Needs evaluation was on February 15th in Milwaukee. We met with the doc, physical, occupational and speech therapy. They therapists all evaluated Madilyn and placed as follows:
Cognitive (play skills): 4 months
Gross Motor: 4 months
Fine Motor: 5 months
Speech (receptive): 7 months
Speech (expressive): 8 months
then the doctor came in to talk to us..........................she explained that they were shocked after the last evaluation (last June) that Madilyn could do anything at all. They expected her to be almost vegetative because she wasn't being properly nourished or worked with........they called it "unintentional neglect". They also told us the Madilyn is now labeled as severely developmentally delayed and that she wasn't born this way, she was made this way because she spent the first 11 months of her life on her back and not being worked with. While this was not shocking at all it was devastating to hear. I always hoped that no doctor would ever confirm my worst fears and she did. On a good note she said we can overcome some of it...it'll just be 5 times the work............so we work........and she still hates the butt........so I sing...
First months with grandma
Since Madilyn has come to live with me we have survived croup at Thanksgiving, strep throat at Christmas, 12 teeth and a nasty virus that threatened to take her life. We have also learned to pick our head up, roll over, chatter like crazy and giggle. There is nothing more amazing than hearing a baby giggle especially when it took over a year before you got to hear it. Watching Madilyn grow and accomplish things has made me realize how much I took for granted with my own three children. They were "normal, healthy" kids. I think back to all the impatience when I was in my 20's and they were little and wanted to count every step and put their shoes/clothes on themselves and now I think: "I wonder how old Madilyn will finally be when we get to do that?" I have friends that have babies/grandchildren and they are less than 6 months old and they are already bigger than Madilyn and starting to sit up on their own and I think........someday she'll finally sit.....she has such an aversion to sitting on her butt, it's often frustrating but we keep working on it.......and I sing...I suck at it but when she's sitting I am either whistling or singing cause then she doesn't have a fit right away and will actually sit for a minute.
We have incorporated weekly Home Nursing visits for weight checks into our routine as well at physical therapy/visual therapy and other home visitors as well. We make weekly weigh-in calls to her GI doc from Children's Hospital so they can montior/adjust her feeds as needed. Is it sad that the return call from Nicole (the GI nurse) is usually one of the highlights of my week? It used to be Saturday night drinks with friends and now it's a happy GI doc........my how life has changed...:)
Madilyn's beginning
Madilyn's life began at Froedtert Hospital in Milwaukee, WI at 4:30 am on Thursday Oct. 6, 2011 via emergency c-section after her mother's umbilical cord collapsed. She came out breathing on her own at One Pound 5.5 ounces and 12 3/4 inches long. She proceeded to spend the next 2 1/2 months in the NICU/NPCU at Children's Hospital of Milwaukee before she was able to come home. Madilyn has multiple health issues starting with a Dandy Walker Malformation (part of her brain did not develop) that she was diagnosed with while her mom(my daughter) was still pregnant with her. While in the NICU she suffered from retinopathy of prematurity (ROP) which ended up leaving her blind in her left eye and with visual problems in her right eye. She had hydrocephalus (water on the brain) to which she has a VP shunt on the right side of her brain. She has an infant feeding disorder so she gets the majority of her nutrition through a g-tube in her abdomen. She had been diagnosed as failure to thrive and has an X-chromosomal abnormality with a Turners Syndrome Variant. They've never see the x-chromosome lines that Madilyn has before so they are tracking her for research so they can learn from her and maybe someday it'll help another child.
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| first time I got to hold her in my arms!! |
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| proud grandpa!!! |
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| this is a normal size newborn carseat...she's sooo small... |
She was hospitalized in March 2012 for 5 days for failure to thrive and did all right for a few months after that and finally came to live with me (grandma) in September 2012. She weighed 9lbs 5 ounces then. Madilyn's parents both love her dearly but they are young and being with grandma is the best place for her at this point in time.
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