Family Vacation

Family Vacation

Tuesday, December 3, 2013


The Monday before Thanksgiving we had a follow-up at the pediatrician for Nathan, he had Bronchitis and she wanted to see him again to make sure it was all cleared up. A couple days before the appt. Nathan had started to cough again so I thought he was getting a cold, no big deal, because he didn't have a fever and was acting normal. We got to the office and the nurse asked me how he was doing, I told her about the cough and that I didn't think it was anything serious and he was much better than he was when he had Bronchitis - she agreed that his breathing sounded pretty good and sent the Dr in. The Dr talked to both boys for a while and then listened to Nathan's lungs.

I knew it wasn't good when she listened to his left side a lot. She finally told me he had no breath sounds on that side at all and the right lung sounded bad but was at least moving air. She wanted us to go to the ER but we played lets make a deal. We agreed that first we would try to give him a nebulizer treatment and if it helped then he "just" had pneumonia but if it didn't help we would go to the ER. Thankfully the neb treatment helped and we left about an hour later with a prescription for two antibiotics and steroids, and a follow-up on Wednesday. Off to CVS we went to get his meds filled, I had a prescription for Trevor so I got that filled while I was there. Poor Trevor was starving by now since we were at the Dr for over an hour. I told him I would get him lunch after CVS, I never imagined it would take  a long time.

At CVS they attempted to fill our prescriptions. This was after the tech argued with me about him being on two different antibiotics. Finally the pharmacist intervened and explained to her that it was OK for him to be on both at the same time. Unfortunately that took a long time, and the meds weren't even filled yet. Then she informed me that one of his antibiotics was hard to get (I knew this going in) and they didn't have it, no one did. We were in latham and the closest CVS that had it was in Delmar, we had no choice we had to go but first we had to wait for the other prescriptions to be ready.  About an hour and a half after we got to CVS we left with our meds and an address for the CVS in Delmar, but first Trevor needed food.

After a quick stop for lunch we went to the second CVS of the day and got the last prescription filled. I finally got both boys home and got Nathan tucked into my bed. By this point he's been hearing about how sick he is for a few hours and he has decided to play the part. He requested movies in my room and he got it.

He was back at school on Tuesday so I got ready for a couple sleepovers on Wednesday night for all of us at my parents house and then the boys were off to their other grandparents house on Thursday night so I could go shopping.

I packed a lot more meds than I had planned, and wrote out a lot of instructions but we were all packed.

Wednesday I had a meeting with Nathan's teacher (who confirmed that he is doing great) and then I went to get the boys and go to the pediatrician. While we were there she was delighted with how great Nathan sounded and then sent us on our way. From there we went to my parents house for prep-party (when we make food for Thanksgiving) and a sleep over.

Thursday was freezing so I needed to bundle up both boys for the Turkey Trot. Trevor was running with Nat, Eddy and I from the regular starting line and Nathan was going to join us very near the end with Eeaa (if you talk to him he will tell you that he started at the penumonia starting line). Trevor cried and wanted to be carried a lot because he was so cold. I'm not sure Nathan's feet ever touched the pavement but at least they both crossed the finish line and got a medal - they both think they won. Then we stood around and watched the 5K finish. We somehow missed Eeaa and Nat finishing, darn!

Once they were done running we all but ran to the van to drive home, we were ready to be warm! The rest of the day was fun but uneventful, neither boy ate dinner with us. Trevor was full of appetizers and Nathan just didn't want to eat because Trevor wasn't eating. Then we hung around and had fun with cousins for a while. Then the B'ville family left to drive home and the boys left to go to their other grandparents house, so I got ready to go shopping.

I hope you all had a great Thanksgiving, we sure did!

Wednesday, November 20, 2013

He's Six

On the 13th of this month Nathan turned six. For most parents their child's birthday is simply a reminder of the joy they experienced the day that child was born, but for us it's a reminder of how strong our little boy is and how far he's come in six years.

It seems hard to believe that it was six years ago that Nathan was born and our nightmare began. We were first time parents with a very sick child. To say we were overwhelmed would be an understatement. That wasn't what we had prepared for when we first found out we were pregnant.

Then on the 14th we had a different anniversary, it was the sixth anniversary of Nathan's first surgery. He was first wheeled into the OR when he was less than 24 hours old. It was supposed to be a three hour surgery, the surgeon called us six hours in to get a verbal consent for a couple more things and told us it would be a couple more hours until it was all over. The surgery didn't go as planned and there had been a couple surprises, we later learned that this was just who Nathan was and he seldom had a surgery go as planned.

The 14th was also the day we got a much better idea of how long Nathan would need to be in the NICU and the result was devastating to both Matt and I. We were prepared for a couple weeks at most, we were told then that it would be six weeks - I laugh at that now, six weeks would have been great. It ended up being 12 surgeries, one 'get to the hospital now, he's really sick' phone call, and one flight to Boston or in real people time 20 weeks before he was discharged.

I'll never forget the day he came home. Matt left Boston first to drive our car and all our stuff home, I stayed to ride in the ambulance with Nathan. It was the longest ride ever and I felt like we'd never get there, but we did. They wheeled Nathan into our tiny apartment and just looked at Matt and I and asked where we wanted him, we had no idea. We had never been solely in charge of his day to day life before and this was new to us. He looked so tiny and fragile, who were we to make such a decision?! We settled on the swing. His equipment vendor was there getting things all set up and the paramedics made sure he was all setup before they left. Then his home care nursing arrived, what a nightmare they were. The nurse manager should have been a clue they wouldn't last long in our house. Then the nurse left and we were alone. Another nurse was coming at 11 for the night shift but we were on our own until then.

It was the first time we'd ever had our son at home and it was scary. I think all parents are scared the first time they're alone with their baby at home, for us that fear was magnified. We had been read the riot act by the NICU about what to go to the ER for (just about everything) and we didn't want to go back, but we did and we went back a lot that first year.

But here we are six years later. Nathan is in first grade, he loves to read and color. He loves going to school and playing with his friend. He's had a few more surgeries since he left the NICU. He's been in the hospital a lot but inpatient stays have become fewer and farther between as he gets older.

But on his birthday all I remember is the fear from that awful day. But no matter what else happened it was the day I became a mom and in the end that's all that matters.

Sunday, November 3, 2013

Too close to a year

So I was just setting up my March for Babies page and there was a link where I could add my blog, so I added my blog link. Then in an attempt to see if it worked I clicked on it and was appalled at what I saw, I haven't updated this blog in close to a year! Good grief, it's been way to long. So please excuse me if I have a lot to say.

Nathan is doing great. He will be 6 soon and is in 1st grade. He loves going to school and taking the bus. He likes to play "race" at recess, I have no idea why since he is slower than most other kids. He loves to read and is starting to read some chapter books. I'm not sure how much of them he understands since I don't think he reads them in the correct order but it makes him feel grown up so we go with it. He went to feeding clinic last November and it was a bust. He and I spent a month in New Jersey at a hotel while we went to a day treatment program, he spent his days learning to eat and I spent my days perfecting the art of sitting in a waiting room. He did great while we were there but the clinic had awful follow-up and we had some trouble keeping up with it without the support of the feeding team. Eventually Matt and I decided that spending hours begging and pleading with Nathan to eat wasn't worth it to us and we stopped. He will now eat yogurt, applesauce (a new addition to the food line-up) and pudding. He also likes to drink chocolate milk, I call all of it better than nothing so for me he's doing great.

Trevor is a beast, and I mean that in the best possible way. He is the complete opposite of who Nathan was at that same age. Trevor loves to run around, jump off things and doesn't understand why I won't let him climb the toy cabinet to get whatever toy is on top of it. He is all boy all the time. He calls his forehead his "boo boo" because more often than not he has a bruise or cut on his forehead from the latest tumble he's taken. Trevor loves to go to the bus stop with us in the morning and wave goodbye to Nathan while he goes off to school. Once we get home Trevor takes the back cushions off the couch and gets a blanket so we can do "snuggles" while he eats his breakfast (don't judge me, yes he eats in front of the TV and I love the cuddles I get because of it). He is at a great age right now. He also loves our cats, unfortunately the sentiment isn't returned and he is frequently hissed at. One of the cats swats at him all the time and he thinks the cat is playing a game with him. The other cat likes Trevor but on his own terms, he does let Trevor pick him up though - that's how I know the cat must be desperate for attention.

Matt and I are busy getting the nursery ready for baby girl, please read that as I'm giving orders and Matt is following them in an attempt to keep his pregnant hormonal wife from crying about nothing. We (ha, Matt again) just finished painting the nursery and are using the same furniture we used for Trevor so that will all be set up soon. I recovered the glider we have so it looks cute in a girls room. Now I just need to decorate and make a few more things, who knew one day I'd be able to sew a crib skirt without hesitation?!

OK, that's the update I have for now. Nothing all that exciting has happened lately. Well, unless you know that Nathan hasn't been to the ER in 6 months! I know to most people that's normal but for us it's huge and a cause for celebration. I'm hoping we can make it through this winter and make it 1 full year without hospitalization, thats a pretty ambitious goal but I'm hopeful.

I promise to update more often than yearly from now on.

Friday, April 5, 2013

One of the worst days

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.

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.

Tuesday, November 20, 2012


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.

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.

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!