Thursday, April 10, 2014
Tuesday, January 21, 2014
Big Changes
Hey Everyone! With a new year and new goals around here Luke has made a change to a new blog...
His Label is SUPERMAN! From now on this is our new blog so make sure to follow Luke from there for now on.
Thanks, Jordan
His Label is SUPERMAN! From now on this is our new blog so make sure to follow Luke from there for now on.
Thanks, Jordan
Tuesday, August 6, 2013
Ick
Let's start off this post with a little caution. Don't read while eating...
Okay, now let's continue. VOMIT! OH how it bothers me so much. I know it is just a part of being a mom. Your child gets sick and you get over it and clean it up. However, since the G-tube placement Luke has taken it to a new extreme. I have now learned that no matter how gross it is, it's better if Luke just pukes on me if I'm holding him. This way my floor isn't dirty and there is less clean up other than the washing machine. His dad on the other hand, can't handle that. He has resorted to running with Luke to the bathroom...leaving behind a trail and wall splatter. I'll take the change of clothes over that mess.
Don't think that vomit is an everyday occurrence, however it can be weekly and maybe more than once a week. It is a very precise game with play with Luke's feedings. We take into consideration the amount the doctors would like Luke to receive, the amount Luke's belly might allow, the time between feeds, along with other variables like being sick. No day is exactly the same. I hate to say it, but I can't even explain to someone how I actually know when or how to feed him. I can tell someone time and amount, but I things could change and his feeding should change. Even Jonathin asks when, how much, and what to feed him. I know if he is snotty like he is now, we can't feed him formula. He is left with juice or pedialyte. The amount can be different depending on the time. It also can change depending on where we are. I'm not going to pump him full if we are out and about. Why you ask....VOMIT. This kid can puke anywhere. It can be 3 hours after eating and he can still have a good shot. After he eats, Luke has to sit for a good 30 minutes. The older and more interested he is, the harder it is to keep him sitting.
We have looked into reflux, but that didn't get any where. I am now hoping with the CP diagnosis we can get some where. As much as a pain the G-tube is, it is the only way I can get something in Luke. Even if he is not feeling well. It is a fine line that we walk with Luke and his nutrition. Hopefully Luke can get over this little sinus issue and we can have a few clean days soon.
Okay, now let's continue. VOMIT! OH how it bothers me so much. I know it is just a part of being a mom. Your child gets sick and you get over it and clean it up. However, since the G-tube placement Luke has taken it to a new extreme. I have now learned that no matter how gross it is, it's better if Luke just pukes on me if I'm holding him. This way my floor isn't dirty and there is less clean up other than the washing machine. His dad on the other hand, can't handle that. He has resorted to running with Luke to the bathroom...leaving behind a trail and wall splatter. I'll take the change of clothes over that mess.
Don't think that vomit is an everyday occurrence, however it can be weekly and maybe more than once a week. It is a very precise game with play with Luke's feedings. We take into consideration the amount the doctors would like Luke to receive, the amount Luke's belly might allow, the time between feeds, along with other variables like being sick. No day is exactly the same. I hate to say it, but I can't even explain to someone how I actually know when or how to feed him. I can tell someone time and amount, but I things could change and his feeding should change. Even Jonathin asks when, how much, and what to feed him. I know if he is snotty like he is now, we can't feed him formula. He is left with juice or pedialyte. The amount can be different depending on the time. It also can change depending on where we are. I'm not going to pump him full if we are out and about. Why you ask....VOMIT. This kid can puke anywhere. It can be 3 hours after eating and he can still have a good shot. After he eats, Luke has to sit for a good 30 minutes. The older and more interested he is, the harder it is to keep him sitting.
We have looked into reflux, but that didn't get any where. I am now hoping with the CP diagnosis we can get some where. As much as a pain the G-tube is, it is the only way I can get something in Luke. Even if he is not feeling well. It is a fine line that we walk with Luke and his nutrition. Hopefully Luke can get over this little sinus issue and we can have a few clean days soon.
Thursday, July 25, 2013
THE DIAGNOSIS
Life has been busy the past two months. We've doing a lot of work around the house. We have celebrated Luke's 2nd birthday. I've been swamped with school work as I finally finish school. Luke himself has kept us on our toes the past few weeks and months.
In May we were finally able to have the MRI done I have been asking for. The results were what I figured and planned on...severe bilateral periventricular leukomalacia (PVL). In non-medical terms, there is dead areas in the middle of his brain. All I have ever been told is that therapy is the only option to help treat Luke. I was never given outcomes, Luke's life was a big unknown. I don't like the unknown. I'm a planner. I am also a realist...don't sugarcoat things for me. Instead of just getting the PVL diagnosis I wanted more. I want answers to why things are the way they are. I want someone to tell me why? Maybe it's the medical background, maybe it's the fact that I've been next to Luke everyday of his short life watching him fight. I want someone to tell me what we're in for, and specifics at that. I wanted a neurology consult and diagnosis. Today I finally got what I was looking for.
After a discussion and exam with the neurologist she granted us the diagnosis of a mild case of cerebral palsy. Why do I say "grant?" I might be an odd person, but that is what I needed to hear. For the past year I looked into this diagnosis. The Luke's mannerisms and difficulties fit along with the diagnosis. I just wanted someone to back me up. I also needed the diagnosis to get Luke all the funding and help that he will need now and in the future. I know many people would say just having a child is so expensive. Try having a child that has special needs. Yes we have insurance, but we live on one income and the bills are still there and more larger ones are coming in the near future. We can take all the help we can get.
More than the insurance and funding issues, I needed the diagnosis for my own sanity. When Jonathin and I found out we were expecting, we had such big dreams for our son. Please don't think we are now completely depressed and disappointed, because Luke won't live up to our dreams. They were exactly that..."our dreams." Every parent has them, now we move to our new reality and dreams...to walk unassisted, run and play in our backyard, to go to a restaurant and eat a meal off the kids meal, tell me when he hurts or when he is hungry, sit in the living room and play with a toy. These are now my dreams that bring tears to my eyes. Sure we are guilty of watching other kids and getting upset. We are allowed that, but our Superman will get there. These little tasks will take more time and work, but they will be so worth it when he reaches these goals. So my dreams of Luke warming up in those famous striped pants or wearing a gold helmet that matches a famous dome haven't disappeared, but have been overtaken by the more important things in life.
Let's review: as of right now Luke can't sit, crawl, stand, walk, talk more than hi or hey, won't eat or drink, or gain weight. To someone on the outside or someone that don't understand things from the beginning or his special birth it looks like a dismal life. I however would argue till I am blue in the face. This little boy isn't supposed to be here. He fought every obstacle that was placed in front of him. He is stubborn and determined. How else do you overcome a 20% chance of life, numerous infections, a blood pressure as low as 18/12, kidneys determined to shut down, 3 surgeries at once, and not to mention a crazy mother like me. Now we have one less obstacle to cross and we can hopefully move forward.
In May we were finally able to have the MRI done I have been asking for. The results were what I figured and planned on...severe bilateral periventricular leukomalacia (PVL). In non-medical terms, there is dead areas in the middle of his brain. All I have ever been told is that therapy is the only option to help treat Luke. I was never given outcomes, Luke's life was a big unknown. I don't like the unknown. I'm a planner. I am also a realist...don't sugarcoat things for me. Instead of just getting the PVL diagnosis I wanted more. I want answers to why things are the way they are. I want someone to tell me why? Maybe it's the medical background, maybe it's the fact that I've been next to Luke everyday of his short life watching him fight. I want someone to tell me what we're in for, and specifics at that. I wanted a neurology consult and diagnosis. Today I finally got what I was looking for.
After a discussion and exam with the neurologist she granted us the diagnosis of a mild case of cerebral palsy. Why do I say "grant?" I might be an odd person, but that is what I needed to hear. For the past year I looked into this diagnosis. The Luke's mannerisms and difficulties fit along with the diagnosis. I just wanted someone to back me up. I also needed the diagnosis to get Luke all the funding and help that he will need now and in the future. I know many people would say just having a child is so expensive. Try having a child that has special needs. Yes we have insurance, but we live on one income and the bills are still there and more larger ones are coming in the near future. We can take all the help we can get.
More than the insurance and funding issues, I needed the diagnosis for my own sanity. When Jonathin and I found out we were expecting, we had such big dreams for our son. Please don't think we are now completely depressed and disappointed, because Luke won't live up to our dreams. They were exactly that..."our dreams." Every parent has them, now we move to our new reality and dreams...to walk unassisted, run and play in our backyard, to go to a restaurant and eat a meal off the kids meal, tell me when he hurts or when he is hungry, sit in the living room and play with a toy. These are now my dreams that bring tears to my eyes. Sure we are guilty of watching other kids and getting upset. We are allowed that, but our Superman will get there. These little tasks will take more time and work, but they will be so worth it when he reaches these goals. So my dreams of Luke warming up in those famous striped pants or wearing a gold helmet that matches a famous dome haven't disappeared, but have been overtaken by the more important things in life.
Let's review: as of right now Luke can't sit, crawl, stand, walk, talk more than hi or hey, won't eat or drink, or gain weight. To someone on the outside or someone that don't understand things from the beginning or his special birth it looks like a dismal life. I however would argue till I am blue in the face. This little boy isn't supposed to be here. He fought every obstacle that was placed in front of him. He is stubborn and determined. How else do you overcome a 20% chance of life, numerous infections, a blood pressure as low as 18/12, kidneys determined to shut down, 3 surgeries at once, and not to mention a crazy mother like me. Now we have one less obstacle to cross and we can hopefully move forward.
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| It's a huge accomplishment for smiley to ride in a cart |
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| Cruisin' |
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| May, June, and July cousins |
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| the diagnosis |
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| The only fair animal Luke doesn't cry and try to move away from |
Thursday, May 16, 2013
Spring has Sprung
Spring is finally here, which leaves us extremely busy. I hope I can get all caught up in this post along with passing along some really cute pictures.
First lets touch base on how big of an Indiana Hoosier Luke is...A couple weeks ago Luke apparently wrote a little note to the IU Men's Basketball team with the help of his Gammy. He told them how he has been cheering for them since he was 1 pound. He had worn cream and crimson on the flight to Riley at a week old. Luke even sent pictures of him cheering on the team the past 2 seasons. He asked if there was any way possible for a few autographs to go with his striped pants. Less than 2 weeks later Luke received a package! The team out did themselves. Luke's pants are now covered by the team. Cody and Victor even signed his pictures to put in his scrapbook. Luke has a couple jealous friends over his pants. They're now going in a shadowbox for Luke to keep in his room.
The weather has been up and down lately. Luke has been fighting allergies so we haven't been able to be outside a lot lately. When we are able to go out Luke takes full advantage of his swing set. Him and his dad had a nice moment the other night on the swing set after work.
If you haven't heard through the grapevine yet, Luke has begun to roll. And by rolling, I mean non-stop moving and getting stuck. About a month ago, Luke started rolling. Nothing really quick, but moving around the room. Now we can't keep him down. I can't put him down before he is on the move. Even changing his diaper is challenging. More than once I've had a naked baby rolling through the living room. It is time to start baby proofing the house. As the picture shows, he seems to get stuck in uncomfortable places like closet doors. He was still happy though.
This past weekend was our first March of Dimes March for Babies walk. We didn't take part last year because Luke was still in RSV isolation. We made a goal this year of $500, and I'm proud to say we doubled our goal and had over a thousand dollars worth of donations. We had great weather for the walk. It was a little chilly at the beginning, but the 3 mile walk warmed us up nicely. I can't thank everyone enough that walked with us and donated in Luke's name. Hopefully we can double walkers and donations again next year for Superman's Squad.
For Mother's Day Luke surprised me with a new talent...he sat in a high chair for the first time at a restaurant. Usually we have to take an umbrella stroller in and he sits in that the entire time. Sometimes it can be challenging to explain to hostesses that he can't sit up on his own. We weren't given an option on Sunday. The restaurant was so busy there wasn't room for the stroller. We did have to put padding all around him, but he did really well. He started to get fatigued after a little while, however he made it through our entire meal. It was a great surprise. He felt so grown up he thought he could have a drink on his dad.
Yesterday we packed up Luke and made a trip to Riley. It was the appointment I have been waiting for...Developmental Peds. We were there 4 months ago, and that's where the Periventricular Leukomalasia diagnosis came up. We were also told that if Luke still wasn't sitting at this time we could look into a MRI. There was no turning back, I want the MRI. I am tired of guessing about the extent of his brain problems. I want to know what exactly were dealing with. The MRI is scheduled for June 3rd. Luke will be sedated for the procedure, so he can relax. After this, we will be sent to a Neurologist for a consultation. I know therapy is that best treatment, but I need to know what we are going into. We also had x-rays taken of Luke's hips. This is to make sure there isn't holding him back for walking. Apparently breech birth can affect his hips even at 1 pound. Those came back perfectly normal. We also had to have the conversation about Luke's weight. He eats and we don't gain weight. We are going to try a new formula and a new schedule. Luke now has snack times. We are also going to work on getting his digestive system working regularly. We have a few new ideas and medications to try. It seems like were back to trial and error. Hopefully we can get more answers as we move forward.
Tuesday, April 30, 2013
Reid's Arrival
This past weekend we had some excitement around here. Luke's best friend finally arrived. I woke up to a text from my best friend Danielle at 7:30am on Friday...she was having contractions. Now, let me say this wasn't the first time I got my hopes up with her pregnancy. During the past few weeks she had contractions, so I didn't want to get too excited. After checking in on her throughout the day, her wife Cassie finally texted me around 8pm and said they were headed to the hospital. That gave me 3 hours of a drive ahead of me. The way I was running around the house grabbing stuff, getting ready, and going over Luke's schedule with Jonathin you would have thought I was going in labor. I got on the road around 9:30pm and set off for Indianapolis. I kept getting check ups as I was driving. I got to the hospital around 12:30am. Around 8am things started to get exciting...time to push. Let me tell you, I am so glad I never had to go through that. I can't give Danielle more props. She pushed that little boy for over 3 hours. It was amazing when he was born. I am so proud of her and Cassie. They are going to be great moms to this little boy. I was able to stay till that afternoon and visit and hold that little mister. He is adorable. After I left he had a little setback in the eating category. He was in no mood to try to eat, he sure is Luke's friend. So he wanted his own little NICU story. After a few days he is getting the hang of eating now and will hopefully be home soon. I keep trying to explain to Luke he has to wait till we go back to Riley on the 15th to see Reid. He just can't understand that. Danielle says she keeps having to tell Reid that Luke isn't going to show up just cause he is in the NICU. I can only think about all the trouble these two are going to get into.
As much of a happy day it was for everyone, it was a little bittersweet also. I knew I would cry when he was finally born, because I was so happy and excited. But I think I cried a little for myself also. I didn't get to experience labor or the typical birth. Believe me, I'm thankful for everything we went through also or we probably wouldn't have Luke right now. I just feel a little cheated out of the whole experience. It makes me think about having another child in a couple years and trying it again. I can honestly say I haven't really thought about it much, other than my known answer...NO! Jonathin wants at least one more sometime, but right now Luke is my first priority. I couldn't imagine going through this all over again and this time having another child already that I need to be there for. I'd feel like I was cheating one of them if something did go wrong. Oh well....we are no where near this point and I guess it is just food for thought. Reid can fill my baby gap for the time being. Now we have more trips to Indy for play dates. Congratulations again to Danielle and Cassie!
Wednesday, April 24, 2013
First Steps
As a lot of you know, Luke has weekly therapy sessions. Weekly he has occupational and physical therapy and twice a month he has speech therapy. When Luke first came home from the hospital he only had occupational therapy twice a month. As we have watched Luke not progress like we want we have upped therapy and introduced other forms. His therapy is through the First Steps program. It is through the state of Indiana for children 0-3 years old that are developmentally and/or physically behind. After Luke's third birthday, he will move to a preschool program through the school system. He will have his therapy while in preschool.
Today we had a meeting with Luke's coordinator and I came with questions. I know that Luke will need therapy after his third birthday. I needed to know where we went with therapy after his birthday in a year. You might think I'm crazy, but I'm a planner. I want to know before it comes up and bites me. The answers came and a lot more. To go to school, Luke has to be mobile. The teachers can't carry Luke. He can't crawl. So...we had the talk about a wheelchair. As much as I can say it is shock, but it isn't. Jonathin calls me Negative Nancy, but I consider myself Rita Reality. He says it is the medical education, but I think it is just my mom instincts. So where does this leave us...we now have the thoughts of a wheelchair or stroller like wheelchair. While then talking to our physical therapist she brought up some other home medical equipment. If possible she would like to get a stander. It will allow Luke to "stand" and work on muscles. Our therapist also thinks we will end up needing a walker and maybe braces. Once again I am not surprised and am glad someone finally said it.
I didn't get upset until Jonathin came home. I shed a few tears. In the words of our PT, Luke will have to fight for everything he does. Crawling, walking, standing will not come easy for him. As much as I like the support from everyone saying he will catch up, it can drive a person crazy at the same time. Reality is this...Luke is no where near where he should be. I still can't get over all the hurdles he has jumped. He makes me proud daily. Just sometimes, I need someone to speak reality to me.
Today we had a meeting with Luke's coordinator and I came with questions. I know that Luke will need therapy after his third birthday. I needed to know where we went with therapy after his birthday in a year. You might think I'm crazy, but I'm a planner. I want to know before it comes up and bites me. The answers came and a lot more. To go to school, Luke has to be mobile. The teachers can't carry Luke. He can't crawl. So...we had the talk about a wheelchair. As much as I can say it is shock, but it isn't. Jonathin calls me Negative Nancy, but I consider myself Rita Reality. He says it is the medical education, but I think it is just my mom instincts. So where does this leave us...we now have the thoughts of a wheelchair or stroller like wheelchair. While then talking to our physical therapist she brought up some other home medical equipment. If possible she would like to get a stander. It will allow Luke to "stand" and work on muscles. Our therapist also thinks we will end up needing a walker and maybe braces. Once again I am not surprised and am glad someone finally said it.
I didn't get upset until Jonathin came home. I shed a few tears. In the words of our PT, Luke will have to fight for everything he does. Crawling, walking, standing will not come easy for him. As much as I like the support from everyone saying he will catch up, it can drive a person crazy at the same time. Reality is this...Luke is no where near where he should be. I still can't get over all the hurdles he has jumped. He makes me proud daily. Just sometimes, I need someone to speak reality to me.
Thursday, March 7, 2013
removal for gain
Let me just start this one off with a return to memory lane. 2 years ago I was 10 weeks pregnant and hadn't even seen the doctor yet. The morning sickness was just beginning, but the thoughts on what our first baby would look like and act like weighed heavy on my thoughts. We thought we had everything figured out. We had just moved to Bristol, so we could be close to family. I was going to drive back and forth to school to finish up my nursing degree in August and Luke would be here around September 19th. Never did the idea of a not so regular pregnancy, birth, or life after hit us. Yesterday Jonathin, Luke, and I drove down to Riley for what now seems as our monthly routine I asked Jonathin, "Did you ever think that you would be one of these parents? Did you ever think you would have a Riley kid?" Of course the answer is no. Nothing pointed that things would not be "normal." That Luke would have a difficult beginning. We all planned to be watching our "normal" child running around the house, getting into all the cabinets, chasing the dogs. I even have all the cabinet locks and power plug protectors to prove it. It was on my registry from the very beginning. We planned for a chunky little kid, not a string bean that can't keep some clothes on. If you know me at all, you know I'm a planner and a list maker. I learned from the best in that area. The past 2 years have shown me though that plans can change in a heart beat. There is a reason that we are now the parents of this little prized possession. As much as I get upset, worked up, tired, and just strung out I wouldn't want him any other way. We now have a new normal, and the funny part is it can change everyday.
So going with the idea that we are once again changing our life and what we expect, lets update you on our trip to pulmonary. Usually they are the most routine visits. We have seen Nancy Valentine since Luke was home. She monitored him on turning down his oxygen and since removing it. She also watches to see if he needs inhalers just to get through some rough parts. She has seemed to be the most helpful also. We were first seen by a nutritionist because she wondered about his weight and growth. I can honestly say I feel the most comfortable around her.
On our way to Riley Jonathin was complaining...insert comment here, just kidding. Anyways, he was talking how the trip was pointless this month. Luke hasn't been sick, were not on oxygen, and all she is going to do is listen to him and say see you in 3 months. However, I pointed out that if we don't go and Luke does it get sick it is a pain to get back in to see her and to get medication, so we go. This way we stay in the loop.
There is a routine when you have an appointment at the Riley Outpatient Clinic to see a doctor. They call you back and Luke has to be weighed, measured, and looked at. I don't really enjoy this part particularly. For some reason Luke shrinks when we go to Riley. It doesn't matter which specialty we are there to see, but we;re always smaller. Yesterday was no exception. Luke only weighed 18 and a half pounds and was only 30 inches tall. Just last month he was over 19 pounds and 31 inches tall at our own pediatrician. Who knows? So then we go back to the procedure room and go to the list of questions. Am I the only parent of a special kid that feels like my memory is just a filodex? Has he been admitted since we saw him last? Has he had a fever? How much is he eating? What is he eating? Are his vaccination up to date? What did he eat and wear on January 13th? Okay, Okay that last one is a little far fetched, but you get the idea. I have so much in my head about dates and times and what I do and see I don't know how I have room for school things or even if I pushed the start button on the dishwasher. I at least pride myself on my Luke memories. I have calendars, I have notes, and my mind hasn't let me down yet.
Okay so after we go through the normal round up Nancy comes in. She asks a few more in depth questions and then we get to an unexpected area...tonsils. After looking at the lack of growth...nothing new there, she dives deeper. How does Luke sleep? Well I think he sleeps fabulous. I mean all I see on Facebook are mom's complaining about sleep and how they're so tired and here I have a champion sleeper. Sleeps for 10-12 a night, takes 2 naps a day sometimes lasting 4-6 hours. I just assumed that he was like his dad. Jonathin could sleep in the middle of a firestorm and have no recollection of it. Nancy however informed me that this sleeping habit is not normal. Uh oh, there is that word again. We dive into if Luke is comfortable when he sleeps or if he is restless. Well I usually hear every little peep he makes at night in the monitor so I would say he sleeps peacefully. However, I then think about how much he moves. I mean this kid is in a different position every time you check on him. He also seems to get stuck in the corner of his crib by the morning. Just last week I thought to myself, man how are we gong to keep him in a toddler or even a twin bed when he gets too big?
From here I had a feeling I needed to bring up the big tonsils. In the two times he has been sick this year they have swabbed him for Strep throat because his tonsils are huge. One time they were touching. I have brought up removing them, but since it was Strep no one really said much. However, it worried Nancy. So as she did her own exam she had me look in Luke's throat. Tonsils are supposed to be flat and against your throat if you are not sick...Luke's are the size of marbles and stick out...dun dun dun! So where does this leave us? Well Luke could be restless in his sleep because the tonsils could be obstructing his breathing. He moves around so much to find a good place. He is then tired from not sleeping well at night. If he is not sleeping well it could be affecting his growth!!!! There you have it...another possible answer to the never ending question, Why is Luke not growing and catching up????? This then left me to chuckle to myself and I could see on Jonathin's face he knew what was making me laugh.
For the past year at least my grandma Watson has retold the story about my dad. Apparently when he was little he was a skinny little stick of a kid. Then he got sick and they removed his tonsils and adnoids. She swear that did something for him, because he became the husky kid of the family. So much she had to go buy him husky pants. She has sworn up and down about this for some time. So there you go Grandma, Luke might be husky soon too.
So where do we go from here? Do I get in contact with a ENT specialist at Riley? Oh no my friends, first we have to have a sleep study! Do we all remember how that went last time? SLEEP STUDY if you don't remember please review here. I would have to say it is on my top 5 of the worst nights in the past 2 years and that includes all 98 in the NICU. I have never dreaded something so much as a night locked in a room with lights, beeps, and a crying child hooked up to so much stuff that he looks like he is from a horror movie. Also, that when he is upset and wont stop crying, I can't hold him. It is just me and him in this room. It gets to you so much that you have to leave the room, but then you feel so guilty if he wakes up and you are not there.
So, here Jonathin thought we were going to a pointless trip and we come out with some possible answers where we least expected it. Hopefully everything is as simple as removing his tonsils to get this boy moving.
I also forgot other big news. Luke is eating food again. Slowly we are getting back to a jar of food a day. It's been months since he would eat food. He has so began to eat cookies and other food he can handle. He still struggles, but can usually get it down by himself. His tonsils could also be part of his eating and swallowing problem...
So going with the idea that we are once again changing our life and what we expect, lets update you on our trip to pulmonary. Usually they are the most routine visits. We have seen Nancy Valentine since Luke was home. She monitored him on turning down his oxygen and since removing it. She also watches to see if he needs inhalers just to get through some rough parts. She has seemed to be the most helpful also. We were first seen by a nutritionist because she wondered about his weight and growth. I can honestly say I feel the most comfortable around her.
On our way to Riley Jonathin was complaining...insert comment here, just kidding. Anyways, he was talking how the trip was pointless this month. Luke hasn't been sick, were not on oxygen, and all she is going to do is listen to him and say see you in 3 months. However, I pointed out that if we don't go and Luke does it get sick it is a pain to get back in to see her and to get medication, so we go. This way we stay in the loop.
There is a routine when you have an appointment at the Riley Outpatient Clinic to see a doctor. They call you back and Luke has to be weighed, measured, and looked at. I don't really enjoy this part particularly. For some reason Luke shrinks when we go to Riley. It doesn't matter which specialty we are there to see, but we;re always smaller. Yesterday was no exception. Luke only weighed 18 and a half pounds and was only 30 inches tall. Just last month he was over 19 pounds and 31 inches tall at our own pediatrician. Who knows? So then we go back to the procedure room and go to the list of questions. Am I the only parent of a special kid that feels like my memory is just a filodex? Has he been admitted since we saw him last? Has he had a fever? How much is he eating? What is he eating? Are his vaccination up to date? What did he eat and wear on January 13th? Okay, Okay that last one is a little far fetched, but you get the idea. I have so much in my head about dates and times and what I do and see I don't know how I have room for school things or even if I pushed the start button on the dishwasher. I at least pride myself on my Luke memories. I have calendars, I have notes, and my mind hasn't let me down yet.
Okay so after we go through the normal round up Nancy comes in. She asks a few more in depth questions and then we get to an unexpected area...tonsils. After looking at the lack of growth...nothing new there, she dives deeper. How does Luke sleep? Well I think he sleeps fabulous. I mean all I see on Facebook are mom's complaining about sleep and how they're so tired and here I have a champion sleeper. Sleeps for 10-12 a night, takes 2 naps a day sometimes lasting 4-6 hours. I just assumed that he was like his dad. Jonathin could sleep in the middle of a firestorm and have no recollection of it. Nancy however informed me that this sleeping habit is not normal. Uh oh, there is that word again. We dive into if Luke is comfortable when he sleeps or if he is restless. Well I usually hear every little peep he makes at night in the monitor so I would say he sleeps peacefully. However, I then think about how much he moves. I mean this kid is in a different position every time you check on him. He also seems to get stuck in the corner of his crib by the morning. Just last week I thought to myself, man how are we gong to keep him in a toddler or even a twin bed when he gets too big?
From here I had a feeling I needed to bring up the big tonsils. In the two times he has been sick this year they have swabbed him for Strep throat because his tonsils are huge. One time they were touching. I have brought up removing them, but since it was Strep no one really said much. However, it worried Nancy. So as she did her own exam she had me look in Luke's throat. Tonsils are supposed to be flat and against your throat if you are not sick...Luke's are the size of marbles and stick out...dun dun dun! So where does this leave us? Well Luke could be restless in his sleep because the tonsils could be obstructing his breathing. He moves around so much to find a good place. He is then tired from not sleeping well at night. If he is not sleeping well it could be affecting his growth!!!! There you have it...another possible answer to the never ending question, Why is Luke not growing and catching up????? This then left me to chuckle to myself and I could see on Jonathin's face he knew what was making me laugh.
For the past year at least my grandma Watson has retold the story about my dad. Apparently when he was little he was a skinny little stick of a kid. Then he got sick and they removed his tonsils and adnoids. She swear that did something for him, because he became the husky kid of the family. So much she had to go buy him husky pants. She has sworn up and down about this for some time. So there you go Grandma, Luke might be husky soon too.
So where do we go from here? Do I get in contact with a ENT specialist at Riley? Oh no my friends, first we have to have a sleep study! Do we all remember how that went last time? SLEEP STUDY if you don't remember please review here. I would have to say it is on my top 5 of the worst nights in the past 2 years and that includes all 98 in the NICU. I have never dreaded something so much as a night locked in a room with lights, beeps, and a crying child hooked up to so much stuff that he looks like he is from a horror movie. Also, that when he is upset and wont stop crying, I can't hold him. It is just me and him in this room. It gets to you so much that you have to leave the room, but then you feel so guilty if he wakes up and you are not there.
So, here Jonathin thought we were going to a pointless trip and we come out with some possible answers where we least expected it. Hopefully everything is as simple as removing his tonsils to get this boy moving.
I also forgot other big news. Luke is eating food again. Slowly we are getting back to a jar of food a day. It's been months since he would eat food. He has so began to eat cookies and other food he can handle. He still struggles, but can usually get it down by himself. His tonsils could also be part of his eating and swallowing problem...
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| Eating some yogurt bites |
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| just waiting for dinner |
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| playing with some corn |
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| coming home from Riley |
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| Our skinny monkey at his pulmonary appointment |
Wednesday, January 23, 2013
Stewing
I never thought in a million years I would be mad or even upset with Riley...but that day has came. The more I think about things the more upset I get. Not with Riley in general and especially the NICU, but I feel like the ball was dropped in the developmental peds department. We have seen them a total of three times in the past 16 months since Luke was discharged from the NICU. We've changed doctors after a cruddy first visit. After Luke's G-tube placement I was the one to call about an appointment since it was never mentioned or scheduled. Each time I fill out a paper asking me what my concerns are and they are always the same three things: 1. Developmental delays 2. Feeding issues 3. Diet. They give me suggestions about feeding and diet and I even speak to a dietician on occasion, but we never really get answers for the delays. Now I find that they knew all a long why he had the delays and I was never informed.
I have Luke's full report from the NICU while he was a patient there. It is broken down to birth and all the main systems of the body. In bold letters it says: RIGHT IVH GRADE 1. Now to a person that doesn't have any background of medical studies you might not know what this means. It means there is a right interventricular hemorrhage grade 1 AKA: brain bleed. This is something that we were never in formed of that we can remember. This can cause some of our problems we have been experiencing. That isn't all I found. It also says that on an ultrasound on 6/23/11 it showed possible periventricular leukomalacia and that it is recommended to follow clinically! It says it right there that it should have been watched, yet I was never informed. Now I know I could/should have seen this before since I do have a copy, but really should that be my job. There are some many other things that could have been done before now. I can't say things would be different, but we could have had the chance.
The more I think and wonder about things the more upset I get. I have since called our regular pediatrician to discuss it with him next week. I think we need to see a neurologist just to clarify everything. I know if I call Riley myself it will be a couple months. I might be able to get Luke into a neurologist around our area. I think that sometimes doctors don't want to diagnose children right away, but in the long run it is better to have these diagnoses. Then I wonder if I should have looked at the report closer myself and picked it apart. So as it stands Luke's therapists know where we are, and have changed a few things to help up. Luke is wearing his shoes more, especially in his exersaucer. This will help with stability. Hopefully we can get answers and some clarification.
I have Luke's full report from the NICU while he was a patient there. It is broken down to birth and all the main systems of the body. In bold letters it says: RIGHT IVH GRADE 1. Now to a person that doesn't have any background of medical studies you might not know what this means. It means there is a right interventricular hemorrhage grade 1 AKA: brain bleed. This is something that we were never in formed of that we can remember. This can cause some of our problems we have been experiencing. That isn't all I found. It also says that on an ultrasound on 6/23/11 it showed possible periventricular leukomalacia and that it is recommended to follow clinically! It says it right there that it should have been watched, yet I was never informed. Now I know I could/should have seen this before since I do have a copy, but really should that be my job. There are some many other things that could have been done before now. I can't say things would be different, but we could have had the chance.
The more I think and wonder about things the more upset I get. I have since called our regular pediatrician to discuss it with him next week. I think we need to see a neurologist just to clarify everything. I know if I call Riley myself it will be a couple months. I might be able to get Luke into a neurologist around our area. I think that sometimes doctors don't want to diagnose children right away, but in the long run it is better to have these diagnoses. Then I wonder if I should have looked at the report closer myself and picked it apart. So as it stands Luke's therapists know where we are, and have changed a few things to help up. Luke is wearing his shoes more, especially in his exersaucer. This will help with stability. Hopefully we can get answers and some clarification.
Thursday, January 17, 2013
Answers
It has taken over a year, but we might finally have an answer to the delays. No, it isn't just because it was a preemie, but it is "side effect" if you would like to say that.
Yesterday Luke, my mom, and I loaded up and headed to Riley to see the Developmental Peds department. We hadn't seen them since July when the decision to try inpatient feeding therapy was made. At that point they never really gave us many answers other than he needed more nutrition to catch up. So we did what they recommended. Since then we have had our struggles, but we are slowly seeing improvements. However, Luke still does not sit. We have increased therapy and are watching Luke become stronger. For example right now I am watching him roll around the floor just trying to reach things that he has thrown around.
Don't get me wrong, I am PROUD of him and all that he has accomplished. I just really want some answers why we aren't progressing like we had hoped. I was told over and over that he should catch up by the time he is 2...NEWS FLASH! Isn't gonna happen. I know that, and others are finally realizing that too at this point. I'm just more upset that I don't know why.
Well the NP we saw yesterday was happy with Luke's weight gain...wasn't expecting that. Luke is on the chart for height and on the height/weight chart for his adjusted age. He isn't on there by much, but he is on the graph instead of below it. She asked me my concerns, I had three.
1. weight gain
2. nutrition and diet
3. developmental delays
In no particular order. I had heard before that the more nutrition he takes the more he will catch up. The problem is this, his diet changes each day. We fight the vomit, we fight the schedule, we fight life in general with Luke. I was told to work hard at getting in Luke's 5 feeds a day at 6 ounces. Even if Luke is sleeping, we need to feed him. We can either wake him or feed him in bed. I am now going to try and feed Luke earlier so we have a better chance to get his feeds in. I never thought I would say the great sleeping Luke does would hurt him in the long run. We also need to watch our schedule to make sure we are able to feed him on his schedule. Of course this happens when school is just starting and we're still trying to get ourselves in a routine. Also, they would like us back on Duocal. This is the added calories we were on almost a year ago to help a little. So no feed is simple. We have some with Duocal, some with Miralax, some with other meds. Not to mention the occasional inhaler. A complicated life, just got a little more stressed. The dietician is also going to call me this coming week to hash out some details.
Now we get to the big question...developmental delays. Like I said before, we need more nutrition for his growth. It all stems back to an ultrasound from the age of 1 week. At this time we were more worried and stressed about brain bleeds and we celebrated when there was minimal or none. I don't believe we were ever told about the minimal amount of white matter on the right side of Luke's brain. They are saying that his brain is delayed because it is rewiring itself. When he was born so small and so early his brain wasn't ready like the rest of his body. We are playing catch up more than most because of this smaller amount of matter. From what they told us, the greatest help to Luke with rewiring is therapy. To work with him all the time. Along with the high nutritional valued food, he should catch up. They of course can not give me an age when things will get there. They are hopeful that Luke will be sitting within the next 6 months. He is getting so close, he just needs to go over that threshold.
In the back on my head I always wondered about cerebral palsy. He has less muscle tone and is spastic at times. It comes and goes throughout the day. They want to see Luke back in 4 months to see if we have progression. If he is still not sitting and were in the same place they would like to do an MRI to make sure we haven't missed anything. Like I said before this is the first time I've heard about the small amount of brain matter. After speaking to Heather, Lily's mom, she went looking online just to see what she could find today. I give her a huge amount of gratitude. She found something that looks like Luke to a T from what we can see. Periventricular Leukomalacia is what we believe to be Luke's diagnosis. Here is a link This is what the developmentalist was speaking of. The link sums Luke up correctly. The brain dies in areas around the ventricles. This happens predominately in premature infants, especially those with severe infections...ding ding ding. Infants with PVL can face major nervous system problems, especially in movement in the first year and the second year. The only treatment: therapy.
I heard the big words from the doctors, but all the answers come from Heather's searching. I can finally say that there is a reason to the madness and it isn't something were doing wrong. This is our baby, and we need to work with him. I guess in the back of my head I always thought I was the reason he wasn't sitting and I was the reason he was so behind. Now I know that there is a rhyme or reason to all of this. I feel relieve, and hope that we can overcome the obstacles. So not all great news, but I'll take it.
Now just to add some cuteness to your day:
Yesterday Luke, my mom, and I loaded up and headed to Riley to see the Developmental Peds department. We hadn't seen them since July when the decision to try inpatient feeding therapy was made. At that point they never really gave us many answers other than he needed more nutrition to catch up. So we did what they recommended. Since then we have had our struggles, but we are slowly seeing improvements. However, Luke still does not sit. We have increased therapy and are watching Luke become stronger. For example right now I am watching him roll around the floor just trying to reach things that he has thrown around.
Don't get me wrong, I am PROUD of him and all that he has accomplished. I just really want some answers why we aren't progressing like we had hoped. I was told over and over that he should catch up by the time he is 2...NEWS FLASH! Isn't gonna happen. I know that, and others are finally realizing that too at this point. I'm just more upset that I don't know why.
Well the NP we saw yesterday was happy with Luke's weight gain...wasn't expecting that. Luke is on the chart for height and on the height/weight chart for his adjusted age. He isn't on there by much, but he is on the graph instead of below it. She asked me my concerns, I had three.
1. weight gain
2. nutrition and diet
3. developmental delays
In no particular order. I had heard before that the more nutrition he takes the more he will catch up. The problem is this, his diet changes each day. We fight the vomit, we fight the schedule, we fight life in general with Luke. I was told to work hard at getting in Luke's 5 feeds a day at 6 ounces. Even if Luke is sleeping, we need to feed him. We can either wake him or feed him in bed. I am now going to try and feed Luke earlier so we have a better chance to get his feeds in. I never thought I would say the great sleeping Luke does would hurt him in the long run. We also need to watch our schedule to make sure we are able to feed him on his schedule. Of course this happens when school is just starting and we're still trying to get ourselves in a routine. Also, they would like us back on Duocal. This is the added calories we were on almost a year ago to help a little. So no feed is simple. We have some with Duocal, some with Miralax, some with other meds. Not to mention the occasional inhaler. A complicated life, just got a little more stressed. The dietician is also going to call me this coming week to hash out some details.
Now we get to the big question...developmental delays. Like I said before, we need more nutrition for his growth. It all stems back to an ultrasound from the age of 1 week. At this time we were more worried and stressed about brain bleeds and we celebrated when there was minimal or none. I don't believe we were ever told about the minimal amount of white matter on the right side of Luke's brain. They are saying that his brain is delayed because it is rewiring itself. When he was born so small and so early his brain wasn't ready like the rest of his body. We are playing catch up more than most because of this smaller amount of matter. From what they told us, the greatest help to Luke with rewiring is therapy. To work with him all the time. Along with the high nutritional valued food, he should catch up. They of course can not give me an age when things will get there. They are hopeful that Luke will be sitting within the next 6 months. He is getting so close, he just needs to go over that threshold.
In the back on my head I always wondered about cerebral palsy. He has less muscle tone and is spastic at times. It comes and goes throughout the day. They want to see Luke back in 4 months to see if we have progression. If he is still not sitting and were in the same place they would like to do an MRI to make sure we haven't missed anything. Like I said before this is the first time I've heard about the small amount of brain matter. After speaking to Heather, Lily's mom, she went looking online just to see what she could find today. I give her a huge amount of gratitude. She found something that looks like Luke to a T from what we can see. Periventricular Leukomalacia is what we believe to be Luke's diagnosis. Here is a link This is what the developmentalist was speaking of. The link sums Luke up correctly. The brain dies in areas around the ventricles. This happens predominately in premature infants, especially those with severe infections...ding ding ding. Infants with PVL can face major nervous system problems, especially in movement in the first year and the second year. The only treatment: therapy.
I heard the big words from the doctors, but all the answers come from Heather's searching. I can finally say that there is a reason to the madness and it isn't something were doing wrong. This is our baby, and we need to work with him. I guess in the back of my head I always thought I was the reason he wasn't sitting and I was the reason he was so behind. Now I know that there is a rhyme or reason to all of this. I feel relieve, and hope that we can overcome the obstacles. So not all great news, but I'll take it.
Now just to add some cuteness to your day:
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| Little Elvis |
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| Looking real excited for his January Synagis vaccine |
Sunday, January 13, 2013
Big Catch Up!
Hey everybody, we're still here I promise! Starting tomorrow a crazy 16 weeks of school begins, so I figured this is the best time to catch everyone up on the past month and a half. I don't know why it has taken so long, but we have a lot to cover. So here goes.
December was a odd month for all of us. At the beginning we were looking so forward to Christmas, then on the 3rd we lost my grandma. She was a huge part to all of our lives. She would babysit Luke at least once a week for me. We also spent at least once a night each week with her while Jonathin worked. Everything happened so sudden and unexpectedly. So the month left everyone in my family a little lost. However, we pulled it together and even though it was a little sad and different, we had a good Christmas. Luke didn't mind another visit from Santa this year either instead of going to the mall to see him there.
Indiana Basketball has hit it's stride also around here. Luke has his striped pants and is ready for this season. He is also to blame for their one loss, which also means that is due to his mom too. We didn't dress him in crimson and cream that night against Butler. Oh well, we think we did them a favor to alleviate some pressure on the guys. We won't do it again though. Go Hoosiers!
So far we have had our moments with our feeding tube. As of two weeks ago Luke is 18.5 pounds. I feel that he is getting heavier. No week is the same. If Luke is sick we have to dial down the feeds. If were feeling good, then we have to work our way back up to full feeds. Throw in a goofy schedule and that makes things funny. The little extra weight is helping with some sitting also. Luke is trying to sit himself up, but it looks a lot like baby crunches. His therapists are happy with the progress. I just wish it was little quicker. He has been spending a lot more time in his exersaucer lately. He really enjoys it FINALLY. I'm actually afraid he might break it. He is a roller also. He will take off across the floor when you aren't looking. Earlier this week he was in the basement and ended up rolling into the entertainment center and scratched his face. It didn't mind after about 15 seconds.
We also have been waiting patiently for the BIG GAME. That being BCS National Championship Football Game. This little boy hadn't missed a game all season and he wasn't going to start with this one. However, it would have been okay if he went to bed, cause he wouldn't have missed much. Him and his daddy were dressed to impress in all Notre Dame, but even that didn't help the team. It was a good season though, and we are ready for next year.
We've started watching movies and actually paying attention here lately. Also Luke got a DVD/VCR for Christmas this year. So I've been letting him watch movies throughout the day. His favorite is still The Lion King, but he is just starting the Disney collection. Just yesterday we were at my parent's house picking up some of my VHS tapes for him to start watching. He is more into the musical parts, but who isn't really. I just want to give him plenty of time to learn some characters before his first trip to Disney in 22 months, but hey who is counting.
Luke and Quin have been hanging out over the school break also. Luke can still fit in Quin's baby stroller...barely. So Quin has been practicing pushing Luke for the trip to Disney also.
We spent New Years at my grandparents house. Luke stayed awake till midnight, more than I can say about his dad. This year we have many goals for Luke and for us as a family. This is the year for sitting and crawling. Maybe, just maybe a few steps also. We would love Luke to get over his food adversion. Hopefully we can get Luke to take more feeds by mouth and can wean some from the tube. Just really hope that this year is a year of catching up.
This is also the year I can finally finish school and can go to work full time. However, that may be with Luke and his status. It would be nice to have a little more money to work on our house. Slowly we would like to make some upgrades to start making it our own.
Finally, we have signed up for March of Dimes and their March for Babies walk in April. Luke's team is known as Superman's Squad. The walk in April 20th in Elkhart. We hope to have a large walking crew with us. Our goal is to raise $500 before the walk. You can help us, either by donating or walking with us. We hope to also have shirts made for the walk. Any little thing is help to us. I will have more next update, which hopefully will be within a week or so. We are headed to Riley on Wednesday to see Developmental Peds and are hoping to finally get some answers on the delays that Luke experiences. Hope we have caught you all up. School starts tomorrow and it is going to get crazy here real soon. Hope everyone has a great week.
Jordan
Monday, December 3, 2012
GG = GREAT Grandma
It has been too long of time since an update. Luke has went through a cold, cough, and a stomach bug. He has had his first RSV vaccine of Synagis. He has been to Riley for a surgery check up for his g-tube. He has also began speech therapy every other week. And lastly we had a switch of occupational therapist....that is just the past couple of weeks. As much as I could go into all of that, it's not where I'm going with this one...
This past Friday my Grandma, Luke's great grandma was watching him while I worked that evening. She had mentioned that she was having pain in her abdomen and might go to the emergency room later that evening. She has had the pain before along with a bowel blockage. No one in my family expected what would entail now 48 hours later. We have witnessed 2 emergency surgeries and a fighting will of our grandma. We have been up and we have been down. Now as I sit in the intensive care unit waiting room, surrounded by family, my mind wanders to my own great grandma and how little I remember of her. I was 8 when she passed and I can't count enough memories on both hands that I have of her. Then I think of Luke and him being only 1, and how he may not remember not even one memory of his time with his GG. It hurts, especially because he will never know all she has done for him since his earlier than planned birth.
Grandma raced to the hospital to see him before he was airlifted to Riley. She didn't want to miss that little guy. She braved the pain to ride to Indy to see Luke at Riley, when he was only a month and a half old. When we were locked in our home for RSV season, GG would call to check on us and make sure his Mom had a Mountain Dew to get through home arrest. She would always drop everything to come to our house to sit with Luke while we packed our house, or when I would get out of the house for a couple hours. Grandma would always squeal when Luke would grab her and pinch, because it would leave a mark. Just Friday she got a kick out of feeding Luke her whipped cream from her milkshake,
Grandma would jump over backwards and do anything for any of us grand kids, no matter how old we got. She will ride with us to doctor appointments and chase after the kids throughout the house. These memories Luke might not remember specifically, but I hope that we can all keep these memories for him. The pictures tell the story of how much she loved her grand kids, and the way she bragged about her 1 pound miracle great grandson. No matter the outcome of her situation at this early morning, there is no other person I would want to call my G, or my son's GG. We love you Grandma! <3
This past Friday my Grandma, Luke's great grandma was watching him while I worked that evening. She had mentioned that she was having pain in her abdomen and might go to the emergency room later that evening. She has had the pain before along with a bowel blockage. No one in my family expected what would entail now 48 hours later. We have witnessed 2 emergency surgeries and a fighting will of our grandma. We have been up and we have been down. Now as I sit in the intensive care unit waiting room, surrounded by family, my mind wanders to my own great grandma and how little I remember of her. I was 8 when she passed and I can't count enough memories on both hands that I have of her. Then I think of Luke and him being only 1, and how he may not remember not even one memory of his time with his GG. It hurts, especially because he will never know all she has done for him since his earlier than planned birth.
Grandma raced to the hospital to see him before he was airlifted to Riley. She didn't want to miss that little guy. She braved the pain to ride to Indy to see Luke at Riley, when he was only a month and a half old. When we were locked in our home for RSV season, GG would call to check on us and make sure his Mom had a Mountain Dew to get through home arrest. She would always drop everything to come to our house to sit with Luke while we packed our house, or when I would get out of the house for a couple hours. Grandma would always squeal when Luke would grab her and pinch, because it would leave a mark. Just Friday she got a kick out of feeding Luke her whipped cream from her milkshake,
Grandma would jump over backwards and do anything for any of us grand kids, no matter how old we got. She will ride with us to doctor appointments and chase after the kids throughout the house. These memories Luke might not remember specifically, but I hope that we can all keep these memories for him. The pictures tell the story of how much she loved her grand kids, and the way she bragged about her 1 pound miracle great grandson. No matter the outcome of her situation at this early morning, there is no other person I would want to call my G, or my son's GG. We love you Grandma! <3
Friday, October 26, 2012
Thank You!
A blog that I follow religiously had a guest blogger that I also follow this week. It might have been over a year ago, but the feelings don't seem to leave. I thank Pierce's mom and Jack's mom for helping me the past year. And like the post says, I can't thank Lily's mom, Heather, for the past year.
New NICU mom
New NICU mom
Monday, October 15, 2012
Play Weekend
First off can I get a big YIPEE for weight gain. In a week Luke gained a little over a half a pound...this is huge for us. He has been keeping down what we feed him and eating mostly by mouth. Usually once a day we have to tube him, but no complaints here. The best part, he isn't even taking the 6 ounces each feed they want since we have to work up to that point. Imagine the gain we could have when we finally meet that point. Hopefully he keeps gaining.
This morning we will be heading the pediatrician though. He has his first bought with granular tissue formation under his button. So he will need some silver nitrate to stop that. After Dr. Durham shows me today we can do it at home. I know he isn't going to like it when they tell me to give him Tylenol an hour before. ugh!
Luke got to have a play day on Saturday with his "little" cousin Quin. Jonathin and I had our first day to ourselves in what seems like months. There was no other place to take it but at the Notre Dame/Stanford game. We got soaked, but it was amazing! We all slept great that night. Luke was pooped from playing, and we were wore out from the rain.
We have an extra fur baby for a couple days this week. My mom went to Florida and my dad is in Indy for work leaving us with Jules. I think she is more active then our 3 dogs, cat, and Luke combined. She also snores worse than Jonathin.
That is about it around here lately. Not too much to update, and that isn't a bad thing. Oh and GO IRISH!
Jordan
Sunday, October 7, 2012
Week one
We've had some troubles to start tube feeding, but after a little tweaking I think we've figured it out. The doctors want Luke to take 6 ounces every 3 hours. Well, that is asking too much to begin with. So we took that down to 4 oz each 3 hours to begin with. This has stopped the vomiting. Luke will also take more by mouth this way. After this first week, I hope to increase it to 4.5 ounces and keep the same schedule as we go. His incisions have also healed up nice. Not completely healed, but were getting there. Luke is also getting comfortable with his tube. He has started to sleep on his side again and doesn't cry much when we pick him up. He has actually grabbed at it a couple times and it makes me hold my breathe. Either I'm worried he will pull it out or worse, cry out. His button still isn't healed all the way. It gets stuck during the day, and we clean it still and Luke doesn't mind that. Also, Luke has started sleeping better....thank The Lord. The first few days were hard. He is getting back to his normal sleeping times. He still wakes up a couple times throughout the night for his pacifier. You can see the energy coming back to Luke. Hopefully our increase will work this week.
Jordan
Jordan
Wednesday, October 3, 2012
RSV revisited
Well it is that time of year again...flu season/rsv season. What does this mean? Well at the Molnar's it means isolation. I was really hoping to skip it this year, but lets be honest, Luke isn't ready. I think it will effect me more than him, like usual. Back to no trips out just because we can. This year we hope to do some family things that we weren't able to do last year, but it all depends on Luke. Last year it seemed a little easier to stay at home since we had the oxygen and the monitors, but now he is cord free and easier to transport. But Jonathin and I need to stay strong with it this year.
In light of the RSV and lung infections we have witnessed the past few months, I don't think we want to test it. Two preemies we know have had RSV and another NICU friend has had a horrible respiratory infection that has put her back on the ventilator. Last year we were able to get the RSV vaccine Synagis, not this year. The doctors believe that Luke could qualify, however we had to fight for it last year right out of the NICU. Also it is $3000 shot each month for 5 months. Even with our insurance it is a $400 deductible each month....hate to say it we are not made of money. This just adds to our decision for isolation.
So we are just asking a couple favors if you come to visit Luke.
1. Please be up to date on your flu shot and pertussis. If you got the pertussis shot last year, you are still good for this year.
2. Please don't visit if you or someone around you has been feeling under the weather for a day or two. This is just covering us, just in case.
3. Please wash your hands and Purell them before touching or playing with Luke. This isn't just at our house either. Please don't be afraid to ask us either, because we have a bottle of hand sanitizer either on a stroller or in the diaper bag at all times. We've learned since his birth to constantly refresh our hands throughout the day.
4. Please remove your shoes when you come in our house. This is just courtesy to keep germs down around here. I mean think of all you can bring with you from throughout your day.
Hope that you can understand our wants and needs for Luke. We very much want to keep him out of the hospital, especially with the new tube. One less thing for us to worry about. If all goes well this should be our last flu season in isolation.
In other news, Luke is doing well with the feeding tube. We are still trying to figure out the amounts and times. His tummy needs to stretch and get used to it. He doesn't seem to mind the feeds when we tube him, it doesn't always settle with him later on though. The doctors don't seem too worried since it only happens once a day. So were still testing the water. He had his sutures removed today and did great. Now we can clean around the tube a little easier. I don't know which one of us will be happier for Friday...bath day. This kid is starting to put off a stench that we can't cover with lotion much longer. I don't know how we did the wipe down baths for 3 months in the NICU.
Also, Luke will be starting speech therapy soon. First Steps has added that to our schedule of weekly activities. This will help with his feeding and his speech. They don't want to wait too long before catching him up with his communication. We don't know when that will start, but hopefully within the next month.
That seems to catch everyone up on what is going on around here. Hope everyone has a wonderful gloomy Wednesday. It is good day to read, or do some school work around here if I can Luke on board.
Jordan
In light of the RSV and lung infections we have witnessed the past few months, I don't think we want to test it. Two preemies we know have had RSV and another NICU friend has had a horrible respiratory infection that has put her back on the ventilator. Last year we were able to get the RSV vaccine Synagis, not this year. The doctors believe that Luke could qualify, however we had to fight for it last year right out of the NICU. Also it is $3000 shot each month for 5 months. Even with our insurance it is a $400 deductible each month....hate to say it we are not made of money. This just adds to our decision for isolation.
So we are just asking a couple favors if you come to visit Luke.
1. Please be up to date on your flu shot and pertussis. If you got the pertussis shot last year, you are still good for this year.
2. Please don't visit if you or someone around you has been feeling under the weather for a day or two. This is just covering us, just in case.
3. Please wash your hands and Purell them before touching or playing with Luke. This isn't just at our house either. Please don't be afraid to ask us either, because we have a bottle of hand sanitizer either on a stroller or in the diaper bag at all times. We've learned since his birth to constantly refresh our hands throughout the day.
4. Please remove your shoes when you come in our house. This is just courtesy to keep germs down around here. I mean think of all you can bring with you from throughout your day.
Hope that you can understand our wants and needs for Luke. We very much want to keep him out of the hospital, especially with the new tube. One less thing for us to worry about. If all goes well this should be our last flu season in isolation.
In other news, Luke is doing well with the feeding tube. We are still trying to figure out the amounts and times. His tummy needs to stretch and get used to it. He doesn't seem to mind the feeds when we tube him, it doesn't always settle with him later on though. The doctors don't seem too worried since it only happens once a day. So were still testing the water. He had his sutures removed today and did great. Now we can clean around the tube a little easier. I don't know which one of us will be happier for Friday...bath day. This kid is starting to put off a stench that we can't cover with lotion much longer. I don't know how we did the wipe down baths for 3 months in the NICU.
Also, Luke will be starting speech therapy soon. First Steps has added that to our schedule of weekly activities. This will help with his feeding and his speech. They don't want to wait too long before catching him up with his communication. We don't know when that will start, but hopefully within the next month.
That seems to catch everyone up on what is going on around here. Hope everyone has a wonderful gloomy Wednesday. It is good day to read, or do some school work around here if I can Luke on board.
Jordan
Tuesday, October 2, 2012
Tube Questions...help?
Hey Tubie Mom' s, I just have a few questions if you have the time. I would rather hear from you that have experience than the doctors....sorry medical professionals.
How long did it take for your kiddos to get used to the feeds. Luke's stomach still doesn't allow for the 5 feeds of 6oz every 3 hours. He just has slow motility and were sitting at 4 feeds as of now. Also, the past two nights he has gotten sick an hour or more after his last feed and throws it up...and mean all that is there. He is pooping, so I know it is going through him, but still not getting there.
How do you add baby food to the equation? The doctors just want formula, but he loves his food and I don't want to lose what he likes and knows how to eat.
Also, how do you give it? Luke has a wandering hand that likes to grab the tube and then hurts himself. I'm trying to balance giving it slowly, water to flush, and watching his quick reflexes...not always working out.
How fast do you give it? I feel like I'm taking my time, but then its tops going all together. I don't want to make him sick. He doesn't seem to mind it, but I don't want to do it too fast.
I knows lot is trial by error, but any useful tips would be great at this point. Thanks in advance
How long did it take for your kiddos to get used to the feeds. Luke's stomach still doesn't allow for the 5 feeds of 6oz every 3 hours. He just has slow motility and were sitting at 4 feeds as of now. Also, the past two nights he has gotten sick an hour or more after his last feed and throws it up...and mean all that is there. He is pooping, so I know it is going through him, but still not getting there.
How do you add baby food to the equation? The doctors just want formula, but he loves his food and I don't want to lose what he likes and knows how to eat.
Also, how do you give it? Luke has a wandering hand that likes to grab the tube and then hurts himself. I'm trying to balance giving it slowly, water to flush, and watching his quick reflexes...not always working out.
How fast do you give it? I feel like I'm taking my time, but then its tops going all together. I don't want to make him sick. He doesn't seem to mind it, but I don't want to do it too fast.
I knows lot is trial by error, but any useful tips would be great at this point. Thanks in advance
Sunday, September 30, 2012
Well...let's get gaining.
All is well now. The past 48 hours has been long and a little overwhelming. On Thursday Luke, my mom, and I left for Indianapolis to spend the night at my Dad's hotel. He had been in Indy all week due to work. We still hadn't heard from Riley about the time and other information about the surgery when we left. Ofcourse we couldn't have a normal trip to Riley, due to the help of some crazy person in the Riley emergency room. Apparently on Thursday around noon, something chemical spilled in a purse in the ER that led to people becoming sick, and actually coding. The lady that brought the fluids in is still in critical condition. To make a long story short, everything was delayed due to homeland security and the hospital being on lockdown for many hours. So when we did receive the call it was a good thing we had already left, because Luke's surgery was first at 7:30am and we needed to be there at 5:45am! Luke played that night in the big king sized bed and relaxed, unlike his mother.
It was rough the next morning letting the nurses take him back. My biggest fear was the anesthesia and the tube they were putting down his throat to breathe. We'd been through that enough, didn't want to go back. However, the doctors said he did great, and Jonathin made it down in time from work to see him first in recovery. He looked so sad in that bed all drugged up. I think that was the worst part. He got the works with his hernia, orchiopexy, and g tube. Quickly after we saw him he was moved to his room up in the Simon Towers. All he wanted through the day was his blankie, pacifier, and his morphine. We tried not to touch him, because he was so sensitive and it would just agitate him more. He was in and out of sleep all day long. The night wasn't so bad, other than a couple times he was awake and they gave him meds. They started feeds 4 hours after surgery purely through the tube. He didn't seem to mind the food, but sure didn't want us touching his belly. His MIC-EY button looks a lot like a hole on a beach ball. It has large sutures around it holding it in place till Wednesday. We just lock a tube in to it and feed him by gravity. By the time Saturday was there I wanted to see if he would take some by mouth before we tubed him, since that is my plan. I don't want to rely on the tube all the time, so he forgets how to eat. He took half a bottle that way for me and then we were able to tube the rest. Finally after the tiniest of bowel movements we were discharged at 4pm on Saturday. Luke did really well on the car ride home. We thought the carseat would be a problem, but he seemed comfy until you had to get him in and out.
We're now home and Luke has survived his first night back. He must have really missed his bed too, because we are on 12 hours so far of sleep...yea! So today we will take it easy and try to figure out this new lifestyle. thank you again for the prayers the past few days and over the past year. Hopefully this will help us gain some weight and alleviate some stress for all of us.
Jordan
It was rough the next morning letting the nurses take him back. My biggest fear was the anesthesia and the tube they were putting down his throat to breathe. We'd been through that enough, didn't want to go back. However, the doctors said he did great, and Jonathin made it down in time from work to see him first in recovery. He looked so sad in that bed all drugged up. I think that was the worst part. He got the works with his hernia, orchiopexy, and g tube. Quickly after we saw him he was moved to his room up in the Simon Towers. All he wanted through the day was his blankie, pacifier, and his morphine. We tried not to touch him, because he was so sensitive and it would just agitate him more. He was in and out of sleep all day long. The night wasn't so bad, other than a couple times he was awake and they gave him meds. They started feeds 4 hours after surgery purely through the tube. He didn't seem to mind the food, but sure didn't want us touching his belly. His MIC-EY button looks a lot like a hole on a beach ball. It has large sutures around it holding it in place till Wednesday. We just lock a tube in to it and feed him by gravity. By the time Saturday was there I wanted to see if he would take some by mouth before we tubed him, since that is my plan. I don't want to rely on the tube all the time, so he forgets how to eat. He took half a bottle that way for me and then we were able to tube the rest. Finally after the tiniest of bowel movements we were discharged at 4pm on Saturday. Luke did really well on the car ride home. We thought the carseat would be a problem, but he seemed comfy until you had to get him in and out.
We're now home and Luke has survived his first night back. He must have really missed his bed too, because we are on 12 hours so far of sleep...yea! So today we will take it easy and try to figure out this new lifestyle. thank you again for the prayers the past few days and over the past year. Hopefully this will help us gain some weight and alleviate some stress for all of us.
Jordan
Wednesday, September 26, 2012
It's Time
In 48 hours time, we will be getting comfortable in our hospital room at Riley and all will be done...if all goes as scheduled. Luke and I are finishing up our laundry and packing our bags for the occasion. It is hard to know what to pack for this trip. What kind of pajamas for Luke? What kind of clothes to come home in? What is he going to be most comfortable in for the long ride home? I want him to be as comfortable as possible for the 3 and half hours home. Not to mention if we stop. I always over pack, but truthfully who doesn't with kids.
So sometime tomorrow I will getting the phone call from Riley informing me of the time of Luke's surgery. We are thinking it will probably be around 11am since they go by the birth month schedule. So after class tomorrow, Luke and I will be headed down to Indy to stay the night at a hotel. This way it allows Luke to be as comfortable as possible the night before. We don't have to hurry and Luke can get a good last meal before his surgery. Jonathin is coming down Friday morning after he gets off work. It is like being back in the NICU all over again.
I am anxious, nervous, and relieved that this time is finally here. I know we are doing the right thing and it is just time for us to get used to it. I am just praying this works, and we can stop constantly worrying about his weight gain.
At the same time we are down at Riley, a family that has been there for us since the beginning are down there as well. I went to school with Anna's mom and would like to ask for some prayers to be sent her way as well. She is fighting pneumonia and is trying to regain her strength. Just would like to get her home soon along with him mom and dad.
Thanks everyone for your continued prayers and concerns. Hope to keep everyone update as soon as possible.
Jordan
So sometime tomorrow I will getting the phone call from Riley informing me of the time of Luke's surgery. We are thinking it will probably be around 11am since they go by the birth month schedule. So after class tomorrow, Luke and I will be headed down to Indy to stay the night at a hotel. This way it allows Luke to be as comfortable as possible the night before. We don't have to hurry and Luke can get a good last meal before his surgery. Jonathin is coming down Friday morning after he gets off work. It is like being back in the NICU all over again.
I am anxious, nervous, and relieved that this time is finally here. I know we are doing the right thing and it is just time for us to get used to it. I am just praying this works, and we can stop constantly worrying about his weight gain.
At the same time we are down at Riley, a family that has been there for us since the beginning are down there as well. I went to school with Anna's mom and would like to ask for some prayers to be sent her way as well. She is fighting pneumonia and is trying to regain her strength. Just would like to get her home soon along with him mom and dad.
Thanks everyone for your continued prayers and concerns. Hope to keep everyone update as soon as possible.
Jordan
Monday, September 10, 2012
Holy Long Time Batman!
It has been forever since the last update....phew. I can't say there has been a lot going on lately. We are patiently waiting for Luke's feeding tube surgery. September 28th is taking it's time to get here. However, we have had a good time here lately. On Labor Day weekend we took our FIRST family vacation. We went to Holiday World in Santa Claus, IN. This was the first time Luke took a long car ride without visiting Riley hospital. We had a good time. Luke was able to ride a couple rides and play in the pool in the big water park. I think it was more of a vacation for Mommy. I was able to go out and relax while my Mom and Aunt watched Luke. It was the first time I've actually been gone from the house since Luke has been born, that once again, wasn't for a Riley appointment. He did well in the car also. We did plenty of stops for him.
This past weekend Luke and I ventured to the Riley NICU reunion in Indianapolis. Last year at this time, my mom and I walked down to it last year while Luke was still in the hospital. So this was the first year we could go. It was really nice and there was so much for the kids. The next couple years when Luke is a little bigger I think he will be into it more. The best part was getting to visit with Lily and her family. The text messages that we swap daily/weekly does not cover our need to talk on a normal basis. So just those few hours will have to hold us for a couple more months.
Hopefully I can do little updates more frequently now as I get my school schedule figured out...
This past weekend Luke and I ventured to the Riley NICU reunion in Indianapolis. Last year at this time, my mom and I walked down to it last year while Luke was still in the hospital. So this was the first year we could go. It was really nice and there was so much for the kids. The next couple years when Luke is a little bigger I think he will be into it more. The best part was getting to visit with Lily and her family. The text messages that we swap daily/weekly does not cover our need to talk on a normal basis. So just those few hours will have to hold us for a couple more months.
Hopefully I can do little updates more frequently now as I get my school schedule figured out...
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