Thursday, February 28, 2013
Yay for Good Days and News!!!
Yesterday was crazy busy between the monthly doctor visit for Peanugga's Synagis (RSV prevention) shot, parent/teacher conferences for the older kids and gymnastics practice for Shyanne (my 11 year old). Madilyn does really well with the Synagis shots and thankfully they are only 5 months out of the year. Parent/teacher conferences went really well which makes me happy to know that our older children are doing well in school even with all the changes in our house in the past 6 months.
Today I was very happy that I didn't have to leave the house.......it's the little things like this that mean the world to me sometimes. Home Nursing came to visit this morning and Madilyn is up to 12lbs 13ounces!!! WOOHOO!!! Every ounce gained is a struggle so to see her gain 11 1/2 ounces in two weeks is HUGE and makes us incredibly happy. I'm praying she hurdles the big 13 next week. I was also able to coordinate 3 Milwaukee check-ups into 1 trip in the end of May. We'll be there for 3 or 4 days but at least it's only one trip. While we are there we will get Madilyn's annual genetics and neurology check-ups and then the eye exam under anesthesia to track her retina's. We also got the call today about additional physical therapy being added so in addition to the one that comes to our house every other week we'll be going to weekly appointments near our local hospital. I will find out next Friday at our first appointment with her if the new therapist is also the one that will help with the feeding issues..............fingers crossed that it is.
Madilyn showed off for the home visitor from BHK that came today. Normally she won't sit on her butt unless I am singing but today the worker brought lights and sounds bongo drums and Peanugga actually sat on her behind on the floor with only slight help from me and played the drums for several minutes. This is HUGE progress for us. I can actually see now that she will sit on her own hopefully in the not to distant future....all the struggles and horrible singing are starting to pay off. There is nothing better than hearing how thrilled the home visitors/therapists/doctors are with the progress we are making.
Feedings went really well last night/today too. Only two spit-ups which is a big accomplishment after the past several weeks. We are up to 60ml feedings every 2 1/4 hours. It's nice because it leaves a lot more therapy/play time when the feedings aren't so close together. All in all today was an extremely good day......and we love good days.
Today I was very happy that I didn't have to leave the house.......it's the little things like this that mean the world to me sometimes. Home Nursing came to visit this morning and Madilyn is up to 12lbs 13ounces!!! WOOHOO!!! Every ounce gained is a struggle so to see her gain 11 1/2 ounces in two weeks is HUGE and makes us incredibly happy. I'm praying she hurdles the big 13 next week. I was also able to coordinate 3 Milwaukee check-ups into 1 trip in the end of May. We'll be there for 3 or 4 days but at least it's only one trip. While we are there we will get Madilyn's annual genetics and neurology check-ups and then the eye exam under anesthesia to track her retina's. We also got the call today about additional physical therapy being added so in addition to the one that comes to our house every other week we'll be going to weekly appointments near our local hospital. I will find out next Friday at our first appointment with her if the new therapist is also the one that will help with the feeding issues..............fingers crossed that it is.
Madilyn showed off for the home visitor from BHK that came today. Normally she won't sit on her butt unless I am singing but today the worker brought lights and sounds bongo drums and Peanugga actually sat on her behind on the floor with only slight help from me and played the drums for several minutes. This is HUGE progress for us. I can actually see now that she will sit on her own hopefully in the not to distant future....all the struggles and horrible singing are starting to pay off. There is nothing better than hearing how thrilled the home visitors/therapists/doctors are with the progress we are making.
Feedings went really well last night/today too. Only two spit-ups which is a big accomplishment after the past several weeks. We are up to 60ml feedings every 2 1/4 hours. It's nice because it leaves a lot more therapy/play time when the feedings aren't so close together. All in all today was an extremely good day......and we love good days.
Tuesday, February 26, 2013
Drugs and other dirty laundry
So I had a friend question me yesterday about how we ended up with custody of Madilyn and if we knew why she is the way she is. I realized at that moment that I need to "air the dirty laundry" in order for this blog to serve the purpose I want............my daughter and her husband were having serious marital issues that come along with being young and not completely grasping the whole picture when it came to Madilyn's care. I won't speak of the father out of respect to him and his family but I will spill the tale of my daughter. When we obtained full custody of Madilyn and I started interacting with her doctor's they all had the same question, "what drugs was the mother using while she was pregnant?" I was shocked and horrified by this because the mommy in me wanted so desperately to believe that my child would never do this............what I wanted to believe and my reality are world's apart. My daughter has since admitted to smoking pot and taking caffeine pills during the pregnancy. What we believed was a genetic incompatibility between mom and dad may not be so. We will live our lives wondering is it truly just a genetic incompatibility? Is it the drugs? or is it pure fluke of nature? Did the dandy walker cause the chromosome abnormality or vice versa? The doctor's in Milwaukee tell us there is no way to ever have answers to these questions but knowing the type of drugs used is vital in setting the therapy and intervention path. It was my daughter's issues with drug abuse that led to us having Madilyn in our care. I tried everything I could to get help for her and that is not the path she has chosen....I know she loves her daughter but I also know she is not capable of doing what is best for her right now. I pray a lot now, I never used to.........I pray that Madilyn has a happy, healthy life and that my daughter will someday deal with her demons and that the drugs will be part of her past.......I pray that I will someday have a real relationship with her again....I miss her every day and love her with all my heart..flaws and all she is my child.
This is not the path I would've chosen for myself at this point in my life but I believe it is the path I was meant to be on. Madilyn is an absolute blessing in our lives and I believe every child deserves every chance possible to be the absolute happiest they can possibly be and if by sharing our story I can stop one person from using drugs or help another parent/grandparent learn the value of patience/compassion then it is all worth it. I am learning through all of this to not be quite so harsh/judgmental............I pray that people don't judge my daughter.......they are her demons and choices to live with, not ours. Some people may wonder why I chose to put this out there for the whole world to see.....I believe that everything happens for a reason and that Madilyn is here to teach us all something. I also was raised to believe that if you do something, own it, if you said something, admit it.........basically own your actions or else they will come back to bite you in the butt. We live in way to small of an area to attempt to keep "secrets" like this and keeping the truth a secret does not benefit anyone at all........so I chose to put it out there for the whole world in hopes that one less baby is born from a pregnancy complicated by drugs......that one less person will give us the odd looks when we are tube feeding Madilyn in Walmart.
I used to look at babies like Madilyn and think "oh, those poor people".........now I look and think "oh, how sweet". The lives we see at Children's Hospital in Milwaukee make us very very thankful for what we have because it could be 1,000 times worse. When we are there we talk with other parents about specialist offices like most of you talk about grocery stores. I am medically very knowledgeable now...I even impress myself sometimes with all the things I have learned. I am trained to change a g-tube (mic-key) button, check to make sure a shunt is functioning properly and can program any feeding pump you toss my way. After raising 3 children of my own I finally know how to properly install/fit a carseat (a little late I know...) I am the master of medications, side affects and nebulizer breathing treatments. Most importantly through all of this I can finally say that I truly know the meaning of unconditional love.......I always believed I already knew what that meant...........now I know I do......
This is not the path I would've chosen for myself at this point in my life but I believe it is the path I was meant to be on. Madilyn is an absolute blessing in our lives and I believe every child deserves every chance possible to be the absolute happiest they can possibly be and if by sharing our story I can stop one person from using drugs or help another parent/grandparent learn the value of patience/compassion then it is all worth it. I am learning through all of this to not be quite so harsh/judgmental............I pray that people don't judge my daughter.......they are her demons and choices to live with, not ours. Some people may wonder why I chose to put this out there for the whole world to see.....I believe that everything happens for a reason and that Madilyn is here to teach us all something. I also was raised to believe that if you do something, own it, if you said something, admit it.........basically own your actions or else they will come back to bite you in the butt. We live in way to small of an area to attempt to keep "secrets" like this and keeping the truth a secret does not benefit anyone at all........so I chose to put it out there for the whole world in hopes that one less baby is born from a pregnancy complicated by drugs......that one less person will give us the odd looks when we are tube feeding Madilyn in Walmart.
I used to look at babies like Madilyn and think "oh, those poor people".........now I look and think "oh, how sweet". The lives we see at Children's Hospital in Milwaukee make us very very thankful for what we have because it could be 1,000 times worse. When we are there we talk with other parents about specialist offices like most of you talk about grocery stores. I am medically very knowledgeable now...I even impress myself sometimes with all the things I have learned. I am trained to change a g-tube (mic-key) button, check to make sure a shunt is functioning properly and can program any feeding pump you toss my way. After raising 3 children of my own I finally know how to properly install/fit a carseat (a little late I know...) I am the master of medications, side affects and nebulizer breathing treatments. Most importantly through all of this I can finally say that I truly know the meaning of unconditional love.......I always believed I already knew what that meant...........now I know I do......
Monday, February 25, 2013
Feedings & precious sleeping
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..:)
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..:)
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.
 |
| first time I got to hold her in my arms!! |
 |
| proud grandpa!!! |
 |
| 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.
Subscribe to:
Posts (Atom)