As we begin April I can't help but think back to April of 2008, my little boy was nearly 5 months old at that time. He had also just come home from the hospital. 140 days. 12 surgeries. Countless procedures. 1 helicopter ride (he says he remembers it!)
For Matt and I it was 140 days of panic, fear, heartache and more worry than we ever imagined. Things were going good, we thought we were in the clear. We even had a "room-in" night scheduled at the NICU so we could stay there and practice taking care of our son before we came home. Then one morning Matt and I were getting ready to head to the hospital, my mom and Aunt were going to meet us there. I called and talked to Katherine, she said he was fine. Then we hung up because she said he had thrown up a couple times and he looked like he was going to do it again. This wasn't out of character for him so I didn't worry. While Matt was still in bed I took a shower. As soon as I was done my phone rang, it was the hospital. I figured it was Katherine calling to tell me that he had thrown up and was fine now - she knew I worried. As soon as I answered the phone I knew it was bad, it was the Doctor. It was the call I had always feared but never received until then.
It was our "get to the hospital right now" call. They knew there was something wrong, really wrong, but didn't know what. He was getting sicker and sicker and no one knew why. They had surgery in the NICU ready to place an IV and needed consent. I told Matt to shower as soon as I realized what was happening, he got ready in record time. We got to the hospital quickly. Nathan's nursery was closed because of everything going on with him. We waited in the hall - then the Dr came out to talk to us and I saw all the people crowded around my little boy, more people than could fit around his little crib. He was so little but needed so much help just to survive. That was the moment Matt and I made the decision to demand a transfer to a different hospital, we knew Albany Med had done everything they could for our boy but he needed more.
The surgeon (a different one from the usual surgeon) agreed and started working on it. They intubated Nathan and sedated him. Family came - that's how I knew things were bad. While our family had always been supportive and visited frequently, they all came at once. Aunts, uncles, friends, cousins.... they were all there at once. The family was rallying around us and while I knew it was because they wanted us to know they supported and loved us, I couldn't help but think that it was because we might lose our boy and they all wanted to be there for us "just in case"
They tried to do a spinal tap but because of the position Nathan needed to be in to get the fluid they were unable to safely get it done. His O2 dropped dangerously low because the breathing tube was knocked out of position while they were attempting this. The social worker helped us with the transfer, she helped us feel comfortable. We were leaving everything we knew and everyone we loved. We were leaving the staff who loved Nathan as much as we did. We were going to a whole new place and it was scary.
After a couple days we knew it was a matter of hours until the helicopter came for Nathan. Fear paralyzed me. I wasn't sure we were making the right decision. I wasn't sure of anything. I was going to Boston and we weren't sure if Matt was going to stay with me or not. The hotel was reserved for us, we just had to wait. Matt and I were at lunch with our parents when my phone rang. It was Katherine, the flight crew had arrived - it was time.
We ran back to the NICU. We watched as they loaded our little boy up into a tiny incubator (he was 3ozs. over the max weight, we all decided those 3ozs. wouldn't make a difference). Then an announcement was made that Nathan was leaving, we had been there for 17 weeks and had grown to love everyone, we wanted the chance to say goodbye. Doctors, nurses, respirtaory therapists, staff, and other NICU parents all came to say goodbye and goodluck.
It was the scariest flight of my life and my feet were firmly on the ground the whole time...
That is just a little bit of how Matt and I felt during one of the worst days of our NICU stay. I am telling you all this because that pain is a pain I wouldn't wish on anyone. No parent should ever be scared for their child in that way. No parent should have to watch their child struggle so much just to survive their first few months of life but we did. I am asking you to consider a donation to the March of Dimes so they can continue to their lifesaving research into making sure that one day all babies are born healthy.
www.marchforbabies.org/esence22
Family Vacation
Friday, April 5, 2013
Wednesday, November 28, 2012
Almost There
As of Monday Nathan weighed 31 and a quarter pounds, he started at 29 pounds. That means he had gained a little over 2 pounds since we've been here. His g-tube feeds haven't really been turned down but that is in a effort to get him to gain some weight.
As of right now he's eating 4ounces of puree table food (only when he's at clinic, when he's at home I do 4.5ounces) found times a day and drinking 2 ounces of pediasure found times a day. That's a grand total of 16 ounces (or 18ounces when he's home) of food and 8 ounces of pediasure each day.
Yesterday he started learning how to feed himself. We made that one of his goals so that when he goes to Kindergarten he will be able to participate in snack and eat with the other kids. The first time he fed himself it took him nearly half an hour to eat all 3.5 ounces then the second time he fed himself he ate it in 12 minutes. It was amazing to see him eat so naturally, as if he's been doing it his whole life.
He also started trying to eat mashed food. Erica, his feeder, will put the spoon into his mouth on top of his tongue and then move the spoon into his cheek and deposit the food there. He isn't doing great with mashed, he's not learning how to use his tongue to move food and is pocketing it under his tongue. He leaves it there for a while and then swallows the food without chewing. He still has a long way to go with chewing but at least he's moving in the right direction. Later today he gets another weight check, hopefully it's good.
As of right now he's eating 4ounces of puree table food (only when he's at clinic, when he's at home I do 4.5ounces) found times a day and drinking 2 ounces of pediasure found times a day. That's a grand total of 16 ounces (or 18ounces when he's home) of food and 8 ounces of pediasure each day.
Yesterday he started learning how to feed himself. We made that one of his goals so that when he goes to Kindergarten he will be able to participate in snack and eat with the other kids. The first time he fed himself it took him nearly half an hour to eat all 3.5 ounces then the second time he fed himself he ate it in 12 minutes. It was amazing to see him eat so naturally, as if he's been doing it his whole life.
He also started trying to eat mashed food. Erica, his feeder, will put the spoon into his mouth on top of his tongue and then move the spoon into his cheek and deposit the food there. He isn't doing great with mashed, he's not learning how to use his tongue to move food and is pocketing it under his tongue. He leaves it there for a while and then swallows the food without chewing. He still has a long way to go with chewing but at least he's moving in the right direction. Later today he gets another weight check, hopefully it's good.
Tuesday, November 20, 2012
Halfway
As I write this we are getting ready to go into Nathan's 13th day of feeding clinic, he's halfway done - more than halfway really. He only has tomorrow and then all of next week, 6 treatment days. That will be true as long as he is meeting his goals (he is) and doesn't have his stay extended for any reason.
Nathan is eating 4ozs of puree table food at each of his 4 meals. He eats three different foods at each meal. He also drinks 1.5ozs of Strawberry Pediasure at each meal and then again at night. He's gained 1lb. total since he's first started. We also turned down his overnight g-tube feeds but that was only by a little bit and it was in an attempt to better control his reflux (it failed).
Tomorrow when we go to clinic I will feed him 3 meals and then we will leave for the day. We want to get on the road early since Thursday is Thanksgiving and we have Prep Party Wednesday tomorrow. We don't want to miss a second of family festivities so we wanted to make sure we got to my parents house in pleanty of time.
I talked to Matt tonight and he told me that Trevor is sick of bouncing between houses. He is home for the weekend now and when they pulled into the driveway he said "home, yayyyy" and was super happy to curl up in his own bed tonight. Tomorrow night he will be at my parents house but he'll love having a sleepover with Nathan!
The boys miss each other. I miss my two boys at home. I miss my bed. The novelty of staying in a hotel has worn off for all of us. The novelty of sleepovers has worn out for Trevor. I'm hopeful that we only have one more week left. I don't think any of us can take more than one more week.
Nathan is eating 4ozs of puree table food at each of his 4 meals. He eats three different foods at each meal. He also drinks 1.5ozs of Strawberry Pediasure at each meal and then again at night. He's gained 1lb. total since he's first started. We also turned down his overnight g-tube feeds but that was only by a little bit and it was in an attempt to better control his reflux (it failed).
Tomorrow when we go to clinic I will feed him 3 meals and then we will leave for the day. We want to get on the road early since Thursday is Thanksgiving and we have Prep Party Wednesday tomorrow. We don't want to miss a second of family festivities so we wanted to make sure we got to my parents house in pleanty of time.
I talked to Matt tonight and he told me that Trevor is sick of bouncing between houses. He is home for the weekend now and when they pulled into the driveway he said "home, yayyyy" and was super happy to curl up in his own bed tonight. Tomorrow night he will be at my parents house but he'll love having a sleepover with Nathan!
The boys miss each other. I miss my two boys at home. I miss my bed. The novelty of staying in a hotel has worn off for all of us. The novelty of sleepovers has worn out for Trevor. I'm hopeful that we only have one more week left. I don't think any of us can take more than one more week.
Wednesday, November 14, 2012
Small Setbacks
Yesterday was Nathan's 5th Birthday. It's hard for me to believe that he's already 5 years old. It seems like just yesterday he was 4 - lol, I crack myself up.
He got sick yesterday so it wasn't his best day. He was sent home early from clinic since he was having some trouble breathing. The NP here wrote him prescriptions for steroids, an antibiotic and a different nebulizer med. He rested for the rest of the day with Grandma and PopPop and seemed a little bit better by bedtime. Last night he slept more inclined than usual and today he got a new prescription for another antacid. The Dr said that she wasn't suprised that he needed a different antacid since his eating habbit has changed so drastically. We will start the new antacid tonight, so we'll see how he does overnight. The Dr was very happy with how much better he sounds today and how much better he is breathing today. He is much more himself and happy. He is talking up a storm to Erica, his feeder, so I know he's almost back to normal.
The one night of illness did send him for a small setback. He lost half a pound since Monday, which puts him back at 29 and 3/4 pounds, but he's still up from where he started so that's good. Today Grandma and PopPop are learning how to feed him so he's sticking to "old" foods so they have an easier time learning to feed him. Tomorrow he will be introduced to new foods, eggs.
My goal is to allow him to eat mashed potatoes and gravy on Thanksgiving, we'll have to wait and see if that happens. In other Thanksgiving news there is an article in todays Troy Record about Nathan.
http://troyrecord.com/articles/2012/11/14/sports/doc50a2df734b3e2372959717.txt
I think that is the link to the article. You will have to scroll the page down a little to get to the "ext generation" article about Nathan. He think's he's famous!
He got sick yesterday so it wasn't his best day. He was sent home early from clinic since he was having some trouble breathing. The NP here wrote him prescriptions for steroids, an antibiotic and a different nebulizer med. He rested for the rest of the day with Grandma and PopPop and seemed a little bit better by bedtime. Last night he slept more inclined than usual and today he got a new prescription for another antacid. The Dr said that she wasn't suprised that he needed a different antacid since his eating habbit has changed so drastically. We will start the new antacid tonight, so we'll see how he does overnight. The Dr was very happy with how much better he sounds today and how much better he is breathing today. He is much more himself and happy. He is talking up a storm to Erica, his feeder, so I know he's almost back to normal.
The one night of illness did send him for a small setback. He lost half a pound since Monday, which puts him back at 29 and 3/4 pounds, but he's still up from where he started so that's good. Today Grandma and PopPop are learning how to feed him so he's sticking to "old" foods so they have an easier time learning to feed him. Tomorrow he will be introduced to new foods, eggs.
My goal is to allow him to eat mashed potatoes and gravy on Thanksgiving, we'll have to wait and see if that happens. In other Thanksgiving news there is an article in todays Troy Record about Nathan.
http://troyrecord.com/articles/2012/11/14/sports/doc50a2df734b3e2372959717.txt
I think that is the link to the article. You will have to scroll the page down a little to get to the "ext generation" article about Nathan. He think's he's famous!
Monday, November 12, 2012
Day 6
Well today is the first day of the second week. He is doing remarkably well, it's amazing. Over the weekend he ate his 4ozs at each meal and didn't fight at all about them. He did gag a lot with each meal but that was more because I was having trouble figuring out how much to put on the spoon and was giving him way to much to eat with each bite in the beginning. Then I was doing too little, it was a disaster on my end.
We also had his 5th birthday party, a pirate party. He loved it and had a great time with all his friends. Many thanks to my wonderful sister who did most of the work for the party. She did most of the party planning and organization because I was out of town - she made the gift bags, ordered the cake, set up the decorations and so on. She also made some wonderful food! Both mom's also helped out with food for the party, I think I was supposed to be getting a hint about my cooking ;) The party was great and all the kids had a great time participating in a pirate treasure hunt complete with burried treasure at the end. It really was buried, under the stuffed animals!
Sunday we were interviewed by a sports reported for the Times Union. It's for an article that will run on Thursday featuring Nathan about his running the Turkey Trot this year, his first year participating in the grade school mile. He was excited to talk to the reported and insisted on telling her all about his day at Kindergarten. I also told her all about his medical history and what the turkey trot means to us. Hopefully it will be a good article. I also emailed her a few pictures of Nathan, thankfully grandpa snuck the pictures that he had taken at the birthday party onto my laptop so I could include one of his party.
I also just found out that Nathan gained 1.25lbs since last Monday! That is amazing, I am so happy with that. He was underweight to begin with so we aren't turning his feeds down just yet, we want him to get to a healthier weight before we turn them down but this is a great start!
We also had his 5th birthday party, a pirate party. He loved it and had a great time with all his friends. Many thanks to my wonderful sister who did most of the work for the party. She did most of the party planning and organization because I was out of town - she made the gift bags, ordered the cake, set up the decorations and so on. She also made some wonderful food! Both mom's also helped out with food for the party, I think I was supposed to be getting a hint about my cooking ;) The party was great and all the kids had a great time participating in a pirate treasure hunt complete with burried treasure at the end. It really was buried, under the stuffed animals!
Sunday we were interviewed by a sports reported for the Times Union. It's for an article that will run on Thursday featuring Nathan about his running the Turkey Trot this year, his first year participating in the grade school mile. He was excited to talk to the reported and insisted on telling her all about his day at Kindergarten. I also told her all about his medical history and what the turkey trot means to us. Hopefully it will be a good article. I also emailed her a few pictures of Nathan, thankfully grandpa snuck the pictures that he had taken at the birthday party onto my laptop so I could include one of his party.
I also just found out that Nathan gained 1.25lbs since last Monday! That is amazing, I am so happy with that. He was underweight to begin with so we aren't turning his feeds down just yet, we want him to get to a healthier weight before we turn them down but this is a great start!
Tuesday, November 6, 2012
We're Here
Nathan started at feeding clinic yesterday. He was really upset when I left him in the playroom, he wanted to know why I wasn't staying with him all day. He was worried about where I was going to be all day, he was upset that I wasn't going to be right with him. His first meal with his feeder wasn't great, he had to eat 10 bites each of water, yogurt and pureed banana. The water was no problem, the yogurt went OK but the banana made him fall apart. He didn't want to eat, he didn't even want to hear the word banana. He flat out refused one bite and threw-up another one. So he only got 8 bites of banana and of those bites he seriously gagged on each of them. I asked the Dr if that was normal and she said it was if the child was trying not to swallow it, she didn't seem worried.
His second meal went mostly the same way. He was fed the same three things and same amount as the first meal. He didn't throw up at all with this meal and he didn't refuse any bites so that was an improvement. There was the same amount of gagging. The third meal at clinic went a little better than the first two meals. There seemed to be less gagging than there had been before and he cried less. But it was the end of the day and he was exhausted, so he was ready to be done.
I had to feed him at the hotel, but first I had promised him swimming in the hotel pool. So we got back to the hotel and went swimming for a little while. Swimming is his reward for participating in therapy all day. The therapy is exhausting for him, between his 4 meals (yesterday there was only 3) and all his other therapies he was tired. So by 6pm he was asking when it was going to be time for bed! So he went to bed early last night.
Today has been a little better. We set our goals with the team this morning. His main goal is to eat 3ozs at each of his 4 meals per day. Another goal is to take 1-2ozs of pediasure or milk per day. Those two things would allow us to decrease his tube feeds by 25% - a great goal! Only time will tell but for now, we're happy.
In other news it's like a third world country down here in NJ. The lines for gas are unreal and I'm not sure which day I'm supposed to be allowed to get gas. It's an odd-even thing and I'm pretty sure that today is my gas day but I'm still at 1/2 tank and I'm not sitting in line for an hour for 1/2 tank of gas. Hopefully my 1/2 tank will last until I'm in NY on Friday so I'm allowed to get gas on my way home!
His second meal went mostly the same way. He was fed the same three things and same amount as the first meal. He didn't throw up at all with this meal and he didn't refuse any bites so that was an improvement. There was the same amount of gagging. The third meal at clinic went a little better than the first two meals. There seemed to be less gagging than there had been before and he cried less. But it was the end of the day and he was exhausted, so he was ready to be done.
I had to feed him at the hotel, but first I had promised him swimming in the hotel pool. So we got back to the hotel and went swimming for a little while. Swimming is his reward for participating in therapy all day. The therapy is exhausting for him, between his 4 meals (yesterday there was only 3) and all his other therapies he was tired. So by 6pm he was asking when it was going to be time for bed! So he went to bed early last night.
Today has been a little better. We set our goals with the team this morning. His main goal is to eat 3ozs at each of his 4 meals per day. Another goal is to take 1-2ozs of pediasure or milk per day. Those two things would allow us to decrease his tube feeds by 25% - a great goal! Only time will tell but for now, we're happy.
In other news it's like a third world country down here in NJ. The lines for gas are unreal and I'm not sure which day I'm supposed to be allowed to get gas. It's an odd-even thing and I'm pretty sure that today is my gas day but I'm still at 1/2 tank and I'm not sitting in line for an hour for 1/2 tank of gas. Hopefully my 1/2 tank will last until I'm in NY on Friday so I'm allowed to get gas on my way home!
Tuesday, October 30, 2012
Less than a week
We leave for feeding clinic in less than a week and I'm not even a little ready yet. I've been busy working since I've been back from Florida so I haven't had much time to do anything. It took me a few days to get the house back in order and then we had to get prepared for the hurricane that was supposed to hit. We survived the storm with only a little wind and some rain, nothing bad. Now I'm ready to start getting prepared and packed. I have a few lists but nothing actually packed. Trevor is settled, I know where he will be each day of the week so that makes me feel a little better. Now I'm just left to hope that our hotel in NJ still has power, or at least will have power, when we get there.
Sorry for the quick update but I've got things to do!
Sorry for the quick update but I've got things to do!
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