Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Friday, December 30, 2011

Day 89 of the Feeding Tube

Trey did awesome with feeding yesterday.  He had about 23 ounces during the day so we decided to keep the tube out overnight.  Well, he's just so darn predictable because today we've been struggling to get him to take just 90mL at each feeding.  I don't get it, I don't know why when he doesn't get fed overnight he doesn't eat much the next day.  It's not that he didn't have enough yesterday, he should have had enough to keep his energy up to be able to eat today.  It's very odd.  Instead of crying while being fed he just swats the bottle out of his mouth when he's done.  There's no trying to keep it in anymore to get him to feed.  When he's done he uses his hands to get it out and turns his head.  His first feeding at 6:45 am he took 120 mL, (he then got fed every 3 hours from that) then 80 mL, 45 mL, 85 mL and then 120 mL. 

We also got a letter in the mail the other day that informed us that our appointment to the Gastroenterologist had been cancelled and rescheduled for February 14.  Well, that just wasn't going to work!  I made the January 5th appointment before Thanksgiving and had been calling daily to see if there was a cancellation!  There's no way we could wait till February.  So I called and pleaded with them.  They had me call the office manager and thankfully she was able to fit me in on January 3rd.  She said that they were overbooked though and to expect a wait - they would fit us in somehow.  Hopefully it won't be hours and hours though.

On Wednesday this week we had a special visitor!  Hannah, our nurse from Inova PICU, came to see us!  She came to the house to see Trey and then we went to Cafe Rio for lunch.  It was so nice to see her!  It's nice to be able to talk to someone who knows first hand what we went through.  She was our nurse the first 6 days after surgery and medically, she could read him like a book.  She knew exactly how to manage his pain and care for him more than I ever could have.  She was a godsend to have in the hospital - it was nice to have someone that I felt was looking out for Trey as much as I was.  You could tell she got pretty attached to him during our stay. 

Speaking of the hospital... someone let me know the other day that there are still people from the hospital that are reading the blog.  Hello out there!  I have to admit - I actually enjoyed being around a lot of the nurses and doctors in the hospital.  It was nice getting to know them and I miss interacting with them (not enough to do surgery all over again though!).  We met so many wonderful people that made being there a lot more "pleasant."  I really do think, that besides the help from God, it was the people of Inova that helped me keep my sanity during the time we were there.  The staff there took such good care of not only Trey, but me as well.  Thank you to you all!  I had such high hopes of getting to the hospital with a special thank you during the holidays but things just got so busy.  Feel free to contact us if you get a chance! 

I also would like to share our family Christmas card with the readers of the blog.  I really hope that you had a fantastic holiday season and hope you have fun plans to ring in the new year!

Monday, December 26, 2011

Day 85 of the Feeding Tube

Wow - we are getting closer and closer to being on the feeding tube for 100 days.  Thankfully he only wears it at night now, although I don't know if that makes it any easier.  It does make the days easier... not having to worry about someone pulling on it or it getting in the way... but in some ways its a bit harder.  I have to put it in every night and that is a bit trying.  It's definitely not a pleasant thing to do and it's getting more and more stressful every night.  I put it off.  For example, he really should start his overnight feedings at about 9:30 pm and get his medication at about 10 pm but right now it's 10:50 pm.  I have yet to put the tube in yet though because I really just don't want to do it.  He screams and cries.  Most attempts of putting it in involve lots of gagging and having the tube come out of his mouth.  The other day for the first time it came out the other nostril and when I tried to pull it out it got stuck.  I literally could not pull it out.  I freaked.  I really thought, yup, here's yet another trip to the ER.  Thankfully David was able to finagle it out somehow.  I dread having to put it in at night but he feeds so much better during the day without it in.  Granted, it's still not an amount that would sustain him but it's at least getting him used to taking in a larger amount of formula at one time by mouth.

Montgomery County Infants and Toddlers program came out to evaluate Trey this past Wednesday.  They evaluated him and determined that he will qualify for services through the state and county.  He will get Physical Therapy once a month starting January 20 and Speech Therapy once a week starting in the beginning of January (not sure of the start date yet though).  He is considered roughly to be about 1 month delayed physically and about 3 months delayed speech wise.  Interestingly enough, his oral motor feeding is ok.  They determined he can feed from a bottle just fine but his babbling and self care (holding the bottle and such) is behind.  I'm not too concerned about it at all though.  They say by this time he should be babbling consonants (ba, ba, ba or ma, ma, ma) rather than just open vowel sounds (ahhhhhh and owwwww).  I'm pretty sure my other kids weren't doing closed consonants by 6 months either and so far the oldest's speech is just fine.  The middle child is becoming more understandable but following in Bryce's footsteps for speech.  I think I just have late talkers (not sounders though!  They're all pretty loud!).  I'm definitely not going to turn down the help though!  Especially since it's at no cost to us and it could very well benefit him in the long run.

So, as of now the next thing to look forward to is our Gastro. appointment with Dr. Karla Au Yeung out of Hopkins on January 5th.  Hopefully she'll give us some answers to why Trey won't eat any more than 4 ounces at a time.  He'll actually do about 3 ounces and then he'll scream through the last ounce (that's typical but not all the time).

We had a great Christmas with the boys and they had a blast opening up their presents.  Trey even got in on the fun!  He was all into tearing the paper off of the gifts.  We spent the entire day with family, which is always nice.  We went to my husband's family for brunch and my family for dinner.  The boys just love being able to see everyone in just one day!  It was an incredibly blessed day and we were so glad that Trey was able to spend it with us!

Trey with the Angry Bird stocking stuffers

Saturday, December 24, 2011

Day 83 of the Feeding Tube - Merry Christmas!

Wow, again... a busy, busy week!  The tube has stayed in all week at nights.  Still only drinking on average about 90 mL a feeding.

I wanted to write tonight to wish everyone a Merry Christmas!  I was talking to David this morning and realized that this has been a LONG year so far.  Last Christmas we were just barely pregnant - I was about 2 months along - and this Christmas we have a 6 month old that has already been hospitalized 3 times (4 if you count when he was born!), has had major open heart surgery, was on ECMO for 7 days, an open chest for 10 days, went through a major drug withdrawal and I've now inserted a feeding tube countless times.  I would have never, ever even imagined we'd go through ANY of this this year.  I look back to last Christmas and it seems ages ago.

We went to Christmas Eve services at my father's church (he's a minister) this evening and it was so nice to have Trey out.  It's the first time he has gone to the church I grew up in.  Heck, it's the first time he's gone to church at all!  I just held him the entire time and it was so nice.  He behaved so well and just played with the little reindeer on his feet the entire time.  We are SO blessed that he is able to spend Christmas with us this year.  I am very looking forward to tomorrow to spend a wonderful Christmas with all 3 of my boys and my husband. 

Merry Christmas to all and to all a goodnight!

Friday, December 16, 2011

Day 75 of the Feeding Tube

Wow.  The past 2 days have been very trying.  Trey did great on Wednesday and ate 120 mL at every feeding... so his entire bottle.  Since he did so well I decided to keep the tube out overnight to see how he did.  I kept a bottle next to the bed in case he woke up... but he slept through the entire night!  

Tubeless at night!

Thursday he woke up and I tried to feed him as my eldest went down to the bus stop.  Trey refused to eat.  He screamed his head off while I tried to give him his bottle.  The next 2 feedings he did the same thing, the most I was able to get in during a feeding was 2 ounces.  Finally in the afternoon I was able to get him to eat 3 ounces.  I don't know how I ended up sneaking in the extra ounces at night but I was able to get 500 mL or almost 17 ounces into him during the day.  So I figured I'd keep the tube out again Thursday night.  Hoping that he'd be really hungry today.  Nope.  He refused to eat again today.  I was only able to get 7 ounces into him today.  He just screams and screams at the bottle.  I don't understand why once the tube came out overnight he decided he didn't need to eat.  

Today we had an appointment at his pediatrician for his Synagis (RSV injection) and Rotovirus vaccine.  I discussed the feeding dilemma with him and he was stumped.  He didn't understand, like me, why he started being able to take in 120 mL and then just stop.  He's supposed to take in about 2.5 ounces per pound of formula.  Trey weighs a little over 16 lbs so he should be taking in 32 ounces of formula a day.  That's ideal. My other kids weren't huge eaters... they were very, very fast nursers... but they both gained weight just fine and stayed hydrated.  I don't know if Trey will ever eat 32 ounces but he needs to be at least somewhat close to that!  The doctor thought that we should start tubing him again at night to make sure he stays hydrated.  He did agree with my idea of taking it out during the day to get him to eat more comfortably.  He tried to page the new Gastro. dr. that we are going to see on January 5th to try and get us in earlier but he wasn't sure if she would get back to him.  Today is Friday so I didn't think we'd hear anything today but I'm hoping Monday they might get back to him.  Unfortunately, we're getting close to the holidays and a lot of people are taking off to visit family and such so it might be hard to get in earlier than the 5th.  

So there has been a lot of screaming and crying at our house the past few days - as well as from me!  Not only is Trey having a really hard time eating but yesterday Cole had a blast dumping out baking soda all over the kitchen floor while I ran upstairs for a minute.  He smeared it all over the floor and wow, it was rough to get up!  I had to sweep 3 times, use the swiffer vac, then mop and I can still feel grit on the floor!  Plus, the floor is all smeary.  I was hoping to mop again tonight but today after we got home from the doctor I noticed the dog poo'd all over the house.  Apparently her stomach had been bothering her... it definitely is not a normal thing for her and it wasn't normal poo.  It was such an incredible mess to clean up.  The hallway upstairs, the hallway and the living room!  So that is what I spent tonight doing - instead of mopping I cleaned up crap.  It did get out of the carpet though!  Thank goodness for my Oreck carpet cleaner!

Wow, it's been a long, long day and I'm tired.  Very, very tired. I've been getting good amounts of sleep but I just am still really drowsy feeling.  My body feels like it runs everyday... except that I haven't run!  With that, I'm off to relax!  I tubed Trey already (that's stressful!) and we're going to chill.

Not happy having the tube back in!

Just Chillin'

Tuesday, December 13, 2011

Day 72 of the Feeding Tube - Rice Cereal

Trey did ah-mazing today!  He drank all of every bottle I gave him today!  I also offered him a tablespoon of cereal mixed with 30 mL of formula and he ate it all!  Again, he eats about 60 mL or 2 ounces of formula pretty easy and then it's a bit of a struggle to get him to take the other 2 ounces (sometimes it's 3 ounces easy and the last ounce is a struggle) but he took it all!  If you include the 30 mL he had with his cereal he actually took 1 extra ounce today by mouth!

Today I bought a larger bottle on Amazon, right now I just have 4 oz bottles.  Once I get it I'm going to try to offer 5 ounces at a feeding and see how he does.  If I can get him to 5 ounces I think I'll try keeping the tube out overnight.  Wow - I can't imagine having a somewhat "normal" life!  The only thing that won't be normal for us is that I'm not nursing anymore.  Formula and bottles are a new experience for me.  I have no problem with using formula but I'd prefer not to pay for it.  The idea of paying for something that I could provide is frustrating.  I stopped pumping a few weeks ago because my supply was getting pretty low and the pumping was getting to be too much.  I was trying to feed a bottle, then setting up the tube feedings and then pumping.  It was a pretty long process.  I could probably start pumping more again to try and get my supply back up but I don't know if I have it in me to do that.  The thought of Trey being able to feed himself his own bottle in a few months is also kind of nice.  I've never had that.  I usually nurse the kids until 1 and totally wean at 13 months.

As I write Trey is now receiving his overnight feed of 480 mL or a little over 16 ounces.  He's still set up in the take along swing next to our bed.  His bassinet has now turned into his dresser.  I keep all of his clothes and other supplies in there.  He still doesn't have a room in the house though.  We haven't quite decided what to do with the other kids.  Bryce keeps insisting that he wants to share a room with Cole but I'm not exactly sure if that's a great idea.  We could move the computer down to the basement and move Trey in there but that means a lot of rearranging.  I don't know if we have enough energy for that right now!  I guess we still have a few weeks left to decide.  Right now I should probably just focus on weaning him off of the tube at night and getting through Christmas!

Monday, December 12, 2011

Day 71 of Feeding Tube

Wow - I haven't written in awhile.  The past few weeks have been so busy, well... it's been busy since Trey went into the hospital and then came home... but this was a different kind of busy.  We had Thanksgiving at our house so I spent most of last week prepping for Thanksgiving and straightening the house up for company.  I wanted to keep Thanksgiving here this year, I really enjoy doing Thanksgiving and I just really wanted to keep the tradition going.  We always have it at our house and I spend the week prepping and cooking at night while watching silly reality TV shows.  I have spreadsheets and checklists galore to help me make it through the week smoothly.  Then I have an hour by hour play book that details everything that needs to be done that day.  This year I even included Trey's feedings on it.

We had 15 people here for dinner and it went wonderful.  I was actually done on time this year and the clean up was relatively easy because everything was done and cleaned up before we ate.  This year instead of eating in the dining room we set up 2 extra tables down the middle of the family room off of the kitchen table and had the food in the dining room, buffet style.  This gave everyone a lot more room to move around!  I think everyone had a really nice holiday.  I know we did!

Watching Punkin' Chunkin' before Thanksgiving
Snuggle Time
The Thanksgiving Day spread!
The Thanksgiving Day crew... the picture is a little out of focus.  I used the timer so that I could get in the picture as well. 
The boys on Thanksgiving... getting sick of me trying to get a picture of all 3 of them looking at the camera and smiling.  It never happened.
Tuckered out after Thanksgiving with his favorite stuffed animal.
The Monday after Thanksgiving we had an appointment with Dr. Maureen Lefton-Greif, a Speech Pathologist at Hopkins that specializes in feeding.  My awesome friend Kelly was able to work with a mutual friend, Robin, to get my January 25 appointment with her moved up until November 26.  The appointment went very well.  She does not believe that his feeding problems are due to oral motor problems.  At the appointment she watched him eat his bottle - I couldn't believe he actually drank some of the bottle! - and watched him devour his fingers.  He obviously doesn't have an oral aversion and he can definitely suck and swallow.  She believes the reason he stops eating after about 20 mL is due to a gastro reason... most likely reflux.  She thinks he has associated eating with pain and therefore he isn't eating much.  He'll stop as soon as he fees the reflux.  She recommended a different gastro, Dr. Au Young, through Johns Hopkins and we have an appointment with her on January 5.  I've been calling every day trying to get in earlier due to a cancellation but I've had no luck.  She also had us start feeding Trey applesauce.  Not necessarily for calories but to try and get him to enjoy eating.  She thought giving him something yummy that was different would teach him that all food isn't bad.  I did that for a few days until he gagged on it once and threw up everywhere.  That freaked me out so I stopped and haven't started up again.  I didn't want him to associate solids with throwing up either. 

Trey trying applesauce for the first time.
Montgomery Infants and Toddlers is coming out to evaluate him for services (free Speech and Physical Therapy through the county) on December 21.  There is a long waiting period for everything which is frustrating because he needs the help now!  I should have been on top of this as soon as we got out of the hospital but I was a little preoccupied with other things then.

Last Thursday the home nurse came and we talked a bit about the NG tube (his feeding tube through his mouth).  I had read on a few message boards that a lot of children have trouble eating on an NG tube.  I wanted to take it out and see how he did.  So I decided (after talking with the nurse) to remove it during the day and put it back in at night so that he can get his overnight feed (to make sure he gets hydrated).  So far it's going ok.  I remove the tube in the morning after I give him his medication and he's been taking 3 out of 4 ounces from his bottle on a regular basis.  That's absolutely amazing for him!  Unfortunately, at his weight now he needs about 5-6 ounces so right now we are fortifying his formula so that he gets more calories per bottle than normal.  So Trey gets to be tube free during the day which is so much easier.  He's definitely not thrilled about taking bottles... it's quite a fight to get him to eat those 3 ounces but he'll do it!  The downer about having it out during the day is that I have to put it in every night... that's not fun.

So right now - Thanksgiving is done for another year, the house is decorated, the Christmas cards are sent, the 2012 picture calendar has been sent to the printer and the shopping for Christmas is almost finished!  I haven't wrapped anything yet but I'm hoping to get around to that this week sometimes.  It's been an extremely busy few weeks! 
Having some fun with Cole as Trey naps.
Decorating the tree.

Trey's first big trip out of the house... to see Santa!

Sunday, November 20, 2011

Day 49 of Feeding Tube - Update on Gastro. Dr.

The past few days have been a little exhausting.  After the appointment on Friday, David and I went out to dinner and then went shopping for Thanksgiving.  On Saturday I took Bryce to a birthday party at Shadowland Adventures where he played laser tag.  We then went to Toys R Us to make a list for Christmas.  Bryce was then very patient while I stood in the bottle aisle at Toys R Us for what seemed forever trying to figure out if Trey would take any of them.  There are SO many different kinds to choose from and you can't just buy 1, you have to commit to a package of 3.  I ended up buying the cheapest I could find, Evenflo, and then the additional pack of fast flow nipples.  We did some stuff around the house last night and I tried the new bottles with Trey.  It took awhile and a little coaxing but I was able to get Trey to take 3 1/2 ounces!  Trey and I both fell asleep early last night.  We were exhausted!

The doctor on Friday wasn't extremely helpful.  He can get off the feeding tube when he takes 120 mL at each feeding (for now, this number will increase as he gains weight).  He doesn't know how to get him to eat, we have to see a Speech Therapist that specializes in feeding to work with him and they don't know of any to refer me to except the ones at Children's Hospital and Inova.  He upped his Zantac from 1 mL twice a day to 1.5 mL twice a day.

Today he decided that he's not that interested in the bottle again.  However he did use the bottle twice today and took 2 ounces each time.  Again though, this was after a lot of coaxing to try and get him to take it.  It's very frustrating though.  He hasn't thrown up since we upped his Zantac though, which is great!  We shall see what happens.  So tomorrow I am going to try some magic to get him to take the bottle again.

Tomorrow morning the boys are going to go to the food store with me to finish shopping for Thanksgiving.  I still need to get the produce.  Tonight I started the prepping by dicing the dried apricots for the stuffing.  Tomorrow night I have to chop up the produce for the stuffing and make the cranberry sauce.  The fun begins!

David starting Trey's continuous nightly feed

It's 10 o'clock - medicine time!  He loves sleeping with those arms up above his head!

Thursday, November 17, 2011

Day 46 of Feeding Tube - Cardiologist Appointment (new EF%!)

We had another cardiologist appointment today with Dr. Callahan and it went well.  For this appointment I made sure that I went prepared.  He got his feeding in the car on the way to the appointment so he wouldn't get hungry while we were there, I brought extra food just in case, I brought bottles, pacifiers and an extra change of clothes in case he threw up.

Our appointment was at 11:00 am and I only ran into one small traffic jam.  My dad came to our house and watched Cole for me so that I could focus on the appointment.  The first thing they do at each appointment is weigh him... he was 16 lbs 2 oz.  He's gaining weight nicely!  Then he had his EKG... which I don't know the results of but I'm sure it was ok because no one said anything about it.  Right after his EKG Trey puked all over me.  If you recall... I thought I went prepared... but um, no, I didn't bring a change of clothes for myself!  He threw up twice in the EKG room.  It was pretty surprising because during his EKG he was all smiles and coos. I wasn't expecting the mess that followed.


After his EKG we moved over to another room so that he could get his echocardiogram.  He proceeded to throw up in that room twice, again... the first time was all over the bottom of my shirt.  Thankfully I can pull off puke pretty well.  Not too many people can do that you know, but the extra 10 pounds I've gained on top of baby weight, the acne from stress and the thinning hair from stress and after baby hormones really highlight the throw up.  I'm telling ya, I belonged on the front of Parenting magazine!


His echo went well and he was only a tiny bit cranky.  They put Baby Einstein on the TV for him to watch but he seemed more into watching the echo wand go across his chest.  Dr. Callahan said that he thought Trey's heart looked good on the echo and finally we got to the number I had been waiting for since last month.... his ejection fraction percentage.  Remember, "normal" EF% is around 70%.  Trey went into Inova with a 7% EF and he left Inova with an EF of 30%.  At the cardiologist appointment on October 20 the % was at about 28.  On October 25 at the Montgomery General ER it was the same.  Last night David and I took bets on what his EF% would be.... I was a little more pessimistic and bet 31% and David was a bit more optimistic and bet 40%.  Dr. Callahan joined the gamble today and bet higher than 21% (that was a cop out!).  Today, November 17 it was..... wait for it...  the suspense is killing ya, right?!....  so who won the bet...  ok it was...  click here!

Sunday, November 13, 2011

Day 42 of Feeding Tube

I figured I'd stop counting the days we've been out of the hospital now that it's been over 1 month.  Now I'll keep track of how long Trey will be on the feeding tube.  Today is day 42 of using the feeding tube.  Technically it was put in after he was extubated but they didn't start using it for feeds until October 3.  Before that they just used it for some medications now and then.  October 3 was when he was clear to start eating again, that was 7 days after the pneumatosis had disappeared from the x-rays.  Again, pneumatosis is a diagnosis from radiology that says that they see pockets of air in between the walls of the intestines.  Pockets of air usually means that there is some kind of trauma to the intestines and to be safe the doctors wait to feed till 7 days after the air pockets have disappeared from the x-rays.

Today was a good day for Trey again.  No episodes of throwing up - that's always a plus!  However he is still refusing his bottles.  Now that he can control his arms a little bit better he actually tries to push the bottle out of his mouth with his hands.  I did go out and get the faster nipple for the bottle but it didn't do anything.  He still just played with it or pushed it out.  I really think he's just getting lazy.  I don't know how to fix that though.  Hopefully the Gastro Dr will have some input on Friday about it.  

I began using the Tegaderm tape on his feeding tube rather than the paper tape again today.  I stopped using the Tegaderm to help his skin breath a little after his skin got irritated last week.  The paper tape didn't really hold very well though and I was afraid of him pulling the tube out in the middle of the night.  The Tegaderm holds a lot better.  It also looks prettier.

Trey with the paper tape last night right before going to sleep
Trey sleeps in his travel swing right next to my side of the bed in our room.  The swing allows him to sleep on an incline which is better for getting the continuous feeds and for his reflux.  I have a pad underneath of him to protect the swing from throw up and from pee.  He receives Lasix which makes him pee a lot, plus he sleeps through the night so his diaper gets really, really full and usually leaks out a bit.  I got tired of washing the swing every day and waiting for it to dry so I use the pads so that I can still use the swing through the day upstairs if needed.  We have a towel under the swing to protect the carpet.  His bassinet is still in the room and has now turned into a makeshift closet for him.  I just store his current clothes in it.  

From now on I am going to update just a few times a week since he's been doing better.  I'll still update with his progress but it's pretty much stabilized right now.  We do have a busy week this week though.  Wednesday is our appointment with the home nurse, Thursday is his cardiologist appointment and Friday is his appointment with the gastroenterolgist.  I'm definitely looking forward to finding out if his EF% has gotten any better.  My opinion is that we're due for a new sign!    

Saturday, November 12, 2011

Day 18 Post MGH / 31 Post Inova - Home for 1 Month!

It's November 12 and we have officially been home for 1 month!  It feels like we've been out of the hospital for much longer than that though.  This past month has been one of the longest months of my life.  Trey is now 4 1/2 months old and his birth seems like ages ago.

Today was an interesting day.  Trey threw up in the middle of David giving him his medication.  Since it was less than 15 minutes we're supposed to give him the medication again although we weren't sure how much was left over in the tube (the tube holds about 3 mL of fluid), so we put a call into the cardiologist to see what we should do.  We didn't want to overdose him but we also didn't want him to miss out on a does of his medication because we didn't know what that would do.  While I was changing Trey out of his messy clothes I noticed that Zena (the dog) was licking the mat around Trey's head.  I moved her out of the way and that's when I noticed the cap to the feeding tube was open... yes, Zena very well may have been lapping up Trey's heart medication.  What a mess in so many ways!  

Well, the Dr. Kilgore, the on call cardiologist, had us give half doses of all of his medication.  She said that it probably wouldn't have hurt him to miss a dose but it also wouldn't hurt for him to get some of the dose... we just didn't want to overdose him by giving the full doses again.  We decided to just keep an eye on Zena and 12 hours later she seemed to have survived just fine.  

Today my cold seems to be materializing into something,.  My chest is pretty congested and I'm coughing a lot. I'm just hoping that this is as bad as it will get.  It would be nice if this was the turning point of the cold and I started feeling better soon.  

I finished up the gravy for Thanksgiving today and tomorrow I'm going to start planning out the cooking schedule.  Ideally I'd also like to start straightening up and decorating for Christmas this week as well.  Thanksgiving is always such a busy day and I usually just want to relax the weekend after Thanksgiving.  This year it would be so nice if we didn't have to decorate that weekend... I'd love to just be able to be done, enjoy the decorations and relax.  I figure we can put the tree up and decorate the outside of the house the week after Thanksgiving.  I'll have to see how tomorrow plays out though.  That will dictate how the rest of the week will go.

Daddy's little rookie sleeping in true Trey style - with his hands up above his head

Friday, November 11, 2011

Day 17 Post MGH / 30 Post Inova

Today was a pretty hectic day.  I started off by going to a doctor's appointment for myself.  I've felt just overall crappy for about 2 weeks now and it doesn't seem to be getting better.  2 weeks ago I felt as though I might be coming down with a cold... although I never actually seemed to get one... it hasn't gotten much worse nor has it gotten any better.  The doctor just had me use my Rhinocort nose spray again and to take Musinex to open my chest up more.  I also had some routine blood work done to make sure that everything is ok.

Trey did ok today.  He didn't throw up today at all which is always nice.  It was another day of no luck with the bottle.  He does seem to nurse pretty well though.  I've been trying to weigh him before nursing and after to see how much he takes in but that's still kind of hard to figure out.

David took care of all 3 boys again tonight.  My dad and I went to my cousin Adam's wedding in West Virginia.  It wedding was very nice and it was good to see family.  I hadn't seen them since Trey has been in and out of the hospital.  My father's side of the family all lives in Staten Island, West Virginia and New Jersey so we only see them every few months.  My cousin Erica and I talk on the phone at least every week or so.  I got home at about 10 pm and Trey and I were my room asleep by 10:34!

Thursday, November 10, 2011

Day 16 Post MGH / 29 Post Inova - When it Rains it Pours

Tonight I went to a viewing of a friends wife.  I never met her but he was a dear friend of mine from the ice rink I used to skate at in high school.  During my freshman year of college he listened to me complain about my roommates whenever I wanted - day or night.  He was a huge help during that year.  We've maintained sporadic contact, via the computer, through the years and was glad to hear when he fell in love and then got married.  I remember when his first was born and shortly afterwards he had two more.  Two days ago I was informed by a mutual friend that his wife had died.  I knew she had had some problems over the past few weeks by reading his facebook postings but was shocked to find out she had passed (it was very sudden and unexpected).

It saddens me that this is the second time in 1 week that I have attended a memorial service/wake.  It weighs very heavy on my heart.  Both of these families have young kids and it's terrible that they have had a parent ripped from them.  It was nice to see my old friends today though.  Our mutual friend was also there and we were all able to have a good talk about "old times."  I met the other friends wife as well.  I am just so glad to see that these 2 guys found great wives and had wonderful families.  I just wish it could have stayed that way.

It also saddens me that since Trey went into the hospital I know of 2 people that have started chemo treatments.  One just found out of the cancer that riddles her body and she is going through chemo and radiation.  The other had known for a short while but was just recommended to start chemo treatments.

It's really all too much right now.  Not only do I have this cardiac thing with Trey going on but my heart breaks for these families that are having to go through such pain as well.  On top of it, Trey came out ok.  These other families may not.  Two already are being forced to live through life without their loved on and the other two are faced with fears that I can and can't imagine at the same time.  I'm ready for it to stop pouring.

On a more positive note (sorry for the depressing post... I'm just sad for these families right now), Trey did not throw up today.  He still did not take anything from his bottle though and somewhere during the day we lost a feeding.  Also - mother of the year award will not be going to me this year - I accidentally ripped Trey's feeding tube out of his nose when taking the car seat out of the car.  I was all excited we are becoming more mobile - I got my hair cut today and took Trey's backpack along to do his feeding.  In the car I put the backpack to the side of the car seat so that it wouldn't fall on him (I was going to keep it in the seat with him).  When I got out of the car I totally forgot he was getting a feeding and just picked the seat up while the backpack stayed in the car.  As I took him out the tube slid out from under the tape and out of his nose.  The car ended up getting a small amount of tube feeding... oops.

I gave him some time to go tubeless since I'm sure I traumatized him when it got pulled out.  I figured I'd give him a break before upsetting him again by putting it back in.  When I finally did put it back in I taped it using some cloth tape instead of the Tegaderm film.  A friend mentioned that the cloth would breath better and let his face heal more so I figured I'd try it.  It just doesn't look as pretty!  It was easier to tape on using the cloth tape though.  The reinsertion didn't go that bad and he got over it pretty quickly.


Tubed again.

Wednesday, November 9, 2011

Day 15 Post MGH / 28 Post Inova - Home Nurse

Today our home nurse, Brandis, came to see Trey.  He had a good day.  No incidents of throwing up and he gained some weight.  On the 2nd of November he was 15 lbs, 10 ounces.  In one week he gained 4 ounces which is normal.  His heart rate was normal at 124 bpm and respiratory rate was normal for him, 42.  The only problem is that he is now not having anything to do with the bottle.  He just plays with it and doesn't eat.  This weekend I'm going to go and try get some new bottles to try to see if he will take other types of bottles. 

Day 14 Post MGH / 27 Post Inova - Irritation from the Feeding Tube

The other day when Trey's feeding tube got pulled out a bit from under the tape it left a red mark on his cheek.  When I changed the tape afterwards it must have irritated the skin a bit and it now looks raw where the tube was.  After I re-taped it I moved the tube upwards so it wouldn't be sitting on that spot again.  It looks like it is sore and I am dreading having to take the tape off to put new tape on in a few days.  It looks like it hurts.  I don't want to move the tube to the other side because I just change nostrils and you're supposed to alternate the sides of the nostrils.  So, in the hospital the tube was in the right nostril, right before we left the hospital we moved it to the left nostril and the other day when I did the monthly change I switched back to the right nostril.

We bought a baby scale from Amazon so that we weigh Trey to see how he's doing between nurse visits.  I also thought it would be a good way to guesstimate how much he takes in while nursing, plus I thought it would be good to have when we start the wean from the feeding tube (no idea when that will be yet) to make sure he's not losing weight fast.  Today I nursed him at 11 am and 5 15 pm.  I forgot to weigh him at 11 but according to the scale he took in about 3 ounces after the evening feeding, which is pretty good!  Unfortunately, he threw up again at the 7:30 feeding.  Now I'm wondering if it really is the soy that is helping him keep stuff down.  I thought maybe it was just a coincidence that he stopped throwing up when we started the soy formula.  I thought that since it also seemed to coincide with the stopping of the narcotics that maybe it was the narcotics that were making him nauseous.  It could be that he actually is sensitive to milk products and since I didn't cut dairy out of my diet that might have affected him.  I wish I could find out definitively though because I'd stop pumping and just go directly to formula if it ended up he couldn't nurse!  While I love my son and I enjoy nursing... I also really like my dairy products and after the few months that we've had... I need my cheese and ice cream!  I guess I'll talk with the Gastro. dr about that next week.  Until then I'll just keep that in mind and see what he does.

The home nurse didn't end up coming to the house today.  She wrote down the wrong day in her calendar and had been planning on coming here tomorrow.  Not a big deal for us because we don't have that much going on and he has been doing ok during the last few days.  He spends most of his time eating, cooing, smiling, sleeping or eating his hands now.  He loves to chew on his hands and he tries to jam both of them in there at the same time although he doesn't have much luck with that for long! 

Monday, November 7, 2011

Day 13 Post MGH / 26 Post Inova - Narcotic Free!

Trey received no narcotics today!  Granted, the drugs are still in his system and will be for awhile.  Both Methadone and Valium have a long life, they can be detected in the body for weeks after taking the last dose, but he no longer is receiving any doses of them!  There is the possibility that in the next few days his body will realize he's not getting them and he could still have some withdrawal symptoms but he came down them so slowly and gradually that I'm hoping that is not the case.  He did very well today and had no incidents of throwing up.

Today is also the first day that I have had both Cole and Trey for the entire day together.  We did pretty well I think.  It's hard to get out of the house though because of Trey's feeds.  They take awhile.  First I have to bottle feed or nurse and then whatever he doesn't take I tube.  The process takes about an hour and a half.  We did have an outing to the grocery store today but it didn't go how I wanted it to.  I had wanted to go in the morning but the morning then became 2:30 pm before I knew it.  The actual trip went fine... it was getting there that was a bit tricky!  We did it though and I got all the ingredients I needed to make the gravy for Thanksgiving.  Tonight I cooked the gravy and it is now in the refrigerator waiting for the fat to rise.  Tomorrow I will skim the fat off, finish the gravy and put it in the freezer to store for Thanksgiving!  We are still going to have our big family Thanksgiving here at our house, this year we'll have 13 people plus the kids.  Thanksgiving is my favorite holiday... I love preparing for it!

Tomorrow the home nurse will be here in the morning and hopefully we'll have another weight gain!

Sunday, November 6, 2011

Day 12 Post MGH / 25 Post Inova - Last Day of Valium

Trey kept everything down again today!  He had his last dose of Valium this morning and that's the last dose he'll receive.  Hopefully he'll do ok tomorrow - that is when it will hit his system that he isn't getting anymore.  I think he'll do ok though.

We spent most of today watching Football.  Grandma and Grandpa came to visit and to bring Bryce home.  Both Trey and Cole were happy to see them.  Then Bryce went to a birthday party.  Nana and Grandaddy came over and watched Trey and Cole while David and I went to a local restaurant.  It was the first time we were able to go out alone since August.  It was nice and dinner was good.  It was a greek tapas style restaurant and we had some good plates to share.

Trey really hasn't taken his bottles lately.  I was able to get him to take 50 mL from his bottle during his afternoon feed but he wasn't interested in eating from the bottle for the most part again today.  I don't know exactly how we're going to wean him off of the feeding tube.  Eventually it has to come out!  I guess I'll talk to the Gastro dr. next week to figure that out.  Next Thursday we have an appointment with the cardiologist and then next Friday is the Gastro. dr.

Saturday, November 5, 2011

Day 11 Post MGH / 24 Post Inova - Off Methadone

So today was Trey's last day on Methadone and it went ok.  He was mildly fussy but not too bad.  There were some times during the day that he didn't seem very consolable but Daddy and him worked through it.  He was not thrilled with the bottle today though.  He wanted nothing to do with it so most of his feeds were total tube feeds today.  He didn't throw up at all. So all in all... not a bad day!

Bryce went to Grandma and Grandpa's house to spend the night and Mommy and Cole went into Baltimore city to visit some friends.  We met up with mommy's childhood best friend, Brooke.  Her family and she were in town for Arenacross, dirtbike racing.  Her middle sons both race and were racing at the Baltimore Arena.  Her parents were also in town and it was great to see them as well.  Brooke and I met up together 2 years ago but I haven't seen her parents in about 13 years.  We went to lunch at the Rusty Scupper and then hung out at their hotel for awhile.  Cole loved playing with her 2 sons, 7 years old and 5 years old.  He hit it off with them right away.  He loved running around the hotel lobby with them.  We then head over to the Arena and watched the races.  Cole loved it.  He was yelling out, "go, go go!"  The pros were pretty impressive, they jumped those bikes super high and Cole went wild!  It was a really long day and we ended up getting home around 10 pm.  Cole was incredibly tired.

Tomorrow is Trey's last day of Valium and then he'll narcotic free!

Friday, November 4, 2011

Day 10 Post MGH / 23 Post Inova - Last Day of Methadone!!

Well, Day 2 of Trey not waking up retching up his overnight feed.  Yay!  If you count the day before that, which was just a very moderate amount, it would be 3 good mornings!  I wish that had continued throughout the rest of the day though.  He did have an incident after his 9 am feed and during his 6 pm feed... again though, small amounts.  Definitely doable.  When I say small though I mean, yes, he soaked himself and needed to be changed but at least he didn't soak himself and everything around him!

Yesterday was his last day of Clindamycin (the antibiotic for the possible pneumonia).  Today was the last day of his Methadone.  Tomorrow is his first day without Methadone... it will be yet another milestone in his recovery.  Wow, and I just realized that if I move his Valium dose from noon to 10 am tomorrow we will only have to give medication 2 times tomorrow!  Granted, during those 2 times he will get 4 medications... but only 2 times!!  Wow!  For the past 22 days I have been constantly thinking what comes next... is it time for the next medication, what kind is is it (sedative vs. heart medication vs. antibiotic), specifically...which medication is it.  For a long time we were giving medication 7 times a day at various intervals.  I can't believe it could be down to TWO times tomorrow!  Goodness, the things that excite me now.

I spent the day out of the house most of the day.  David took off work so I could go to the memorial service for my friends husband.  It was a great service.  I went with the group of gals from my Moments 4 Moms group from church.  Afterwards we all went to lunch.  It was a nice but draining day.  Then Cole and I ran some errands when I got home.  So Trey spent more time with Daddy than with me today.

In other news... Trey found his feet this morning...

Whoa... those are part of me?!

Thursday, November 3, 2011

Day 9 post MGH / 22 post Inova - No Puking!

Trey didn't have one episode of throwing up today at all!  I was so thrilled when I woke up this morning to him smiling at me instead of him retching.

Trey and I went to Cafe Rio for lunch today before his appointment at the pediatrician.  I actually packed his feeding pump in the backpack they sent us and we became mobile!  It was Tamale Thursday at Cafe Rio and it was oh so good.  Trey napped while I (and he!) ate lunch and it was very nice to be out.

Yummy - tamales and Milk!

Then we had an appointment with Dr. Lee at our pediatrician's office.  She was very happy with how he looked and sounded.  His lungs sounded much better and he is gaining some weight.  Next week I have to call to see if the RSV vaccination has been delivered yet and then we will set up an appointment to get his 2nd dose.

15 lbs 8 oz!
Tonight we took his feeding tube out to change it and let him go tubeless for his bath.  After the bath I remeasured for a new tube and put it in.  Poor kid - it was not pleasant and he was very upset about it.  I checked the tube but I had a hard time hearing if it was placed correctly or not because he wouldn't stop crying but eventually I could hear it.  Afterwards he went right to sleep though because he was so exhausted.  After he fell asleep I retaped it because the first time I didn't do such a great job.  So that hurdle is now over.  I was afraid of changing it because it's so not pleasant.  You just have to remove yourself from the situation and just do it.

Wednesday, November 2, 2011

Day 8 (home, take 2) - 21 days out of Inova

Wow.  We left Inova 21 days ago.  Unbelievable.  It's hard to believe that we have been taking care of him for 21 days at home.  Things are definitely getting easier but the worry is still there.  It's not constant anymore, which is good, but it's still there.

I've been reading another heart mommy's blog and she is an amazing photographer and writer.  She puts her feelings on "paper" so eloquently.  Her family does inner city mission work in Atlanta and her faith in God is just so evident through her writing and her actions.  Her son has HLHS, which is a congenital heart defect in which the left ventricle of the heart is severely underdeveloped.  Today she wrote a fantastic post called "The Other Shoe."  She writes that now that her son is home it's hard not to worry about everything.  It's hard not to just accept that things may turn out ok... that she's always waiting for the other shoe to drop.  I totally get it.  It's so easy to just worry now.  I worry that every time Trey throws up that it's a sign of something I'm missing.  It's not just reflux or due to his NG tube but due to some odd Gastro issue that we just haven't found yet... a lot like how it went with his heart.  But I need to start trusting in God again that things are going to work out according to his plan.  While I'm not sure of the what's and why's.... there is a plan.  I may not always agree with his plan but God knows best and I need to have faith in that.

Speaking of throwing up though (always a pleasant subject, right?), Trey only had one incident today after his overnight feed and it wasn't all that bad.  It was still a decent amount but it was thicker so it didn't go everywhere.  It also didn't really seem to upset him  Usually after an incident he screams and cries, this morning he just kind of whimpered a little when it came up and looked unhappy for a second and then was ok.  I can deal with that.  So hopefully this is a step in the right direction.  I'm thinking that if he's still doing this in another week that we'll add the Zantac in and maybe he won't do it at all?  They want to go slow though so we can be sure of what's working and what's not.

We had our home nurse come today and she said that next week is her last visit according to the insurance.  I need to call them and remind them of his discharge orders... the hospital recommended 2-3 visits for 8 weeks.  It's only been 3 weeks.  While things are going ok right now it would be nice to have someone to fall back on with questions.  In just 3 weeks I've noticed how things can turn pretty quickly.  Trey is receiving the RSV vaccination but it doesn't fully vaccinate him against it... it just wouldn't be as bad.  It would be good to have someone come to the house and listen to his lungs, check his heart rate and respiratory rates.  Hopefully I'll be able to talk them into approving it.

This morning before our nurse visit Trey and I went to get a blood test.  His Gastro dr. wanted to check his Digoxin levels to see if that was affecting his throwing up.  It had to be 1 hour before he was due to get his next dose, so we went at about 9.  I went into the lab all ready to insist that we skip through the line... the wait at the blood lab in town can be over an hour and I was not going to have him sit in a lab of people that I don't know for an hour and hope that we got in at 9ish to have his blood drawn... they usually aren't the most helpful at the lab.  Today though, they let us right back.  I was shocked!

Trey in the back of the lab waiting to get his blood drawn. I tried my hardest to get his to smile but he knew what was coming!

Today I also changed his feeds.  So overnight he had 480 mL and at 9 he took another 120 mL.  This seemed to go better so I think I'm going to stick with it.  Hopefully tomorrow morning won't be so bad.  Speaking of tomorrow morning... it's midnight now and I'm trying to get to sleep no later than 12:30.  Slowly I'm hoping that we can get that back to 11 pm but being the night owl I am I'm not sure if that will happen.  I enjoy the quiet of the night.  It's very peaceful and I get so much done when people aren't running around the house!

I just realized that I made a mistake on his wean schedule.  I went down on Methadone to once a day today and I also took the Valium down to 0.3 mL.  Oops.  Well, goodness, he tolerated going down on both medications pretty well today.  That's a good sign I think... hopefully the rest of the wean will go ok.  The last day of Methadone is on Friday and the last day of Valium is on Sunday.  Oh, and yes... he gained 3.2 ounces since last week!

Tuesday, November 1, 2011

Day 7 (home, take 2) - Another Good Day

Today was a good day... a slow day, but a good one.  The past two days I have been extremely exhausted.  Today I slept in and took a nap with Trey.  I also have a bit of a sore throat.  I really hope that I am not coming down with something because that would be awful.  Hopefully catching up on sleep and relaxing will help.  I actually got to bed last night before 12:30 am!

Last night we started with the soy.  He did throw up this morning at about 7 am but it was a much smaller amount than normal and it wasn't as traumatic as it normally is.  I stopped the overnight feed early, at about 485 mL instead of 600, but I added in an extra feed at 9:30 this morning to make up for it.  I think that's what I'm going to try tonight... 480 mL at a rate of 55 mL/hour instead of 600 mL at the same rate.  The overnight feed should stop at about 6 ish in the morning and then I will add another feed in at 9 am.

Tomorrow we are going to go for a blood test to test the levels of his Digoxin.  The Gastro. Dr was curious to know what they are because that can cause nausea.  I am also having my thyroid levels checked because I've been exhausted and my hair has been falling out a lot.  Granted, I've been through a lot the past few months and I've also had a lot of hormonal stuff going on by having a baby but might as well get it checked since that too can be changed by pregnancy.  The home nurse is also coming and hopefully Trey has maintained his weight.

Monday, October 31, 2011

Day 5 & 6 (home, take 2) - Trey's 1st Halloween!

Yesterday Trey started throwing up before and after his feedings.  That's new.  I went up to my parents to drop the older boys at my parents and to go shopping for the necessities... nothing too fun.  I also went to my favorite antique store which was really nice.  It was a nice break.  I love my favorite antique store!  I bought an awesome large wooden grasshopper.  But that's off topic...

Trey had awful feedings with David yesterday.  Today he did better - he didn't throw up at all but he screamed and cried whenever I fed him.  Enough that made me worried so I called the Gastro Dr.  They changed his formula to Soy and we're going to see how that goes.

I'm pretty exhausted today.  I didn't fall asleep last night until about 4 am.  Oh yeah.... totally forgot about the throw up last night.  That one was fun.  At 3 am I brought Trey upstairs and while I was halfway up the stairs he threw up all over me.  That was new too.  Usually he just throws up after his feeding but now it's just random whenever you move him.  By the time we got him cleaned up (and me!) it was about 3:30.  I also had to fix his tube because it had wiggled out under the tape.  We taped him up, put new clothes on him and went to bed.  I of course was overtired by that time and couldn't sleep.  I just laid there and listened to him sleep.  I finally fell asleep sometime around 4 am or so.

This afternoon the boys came home and this evening we went over to our neighbors house for dinner and a Halloween party.  They had fun and then we went out for Trick or Treating!  Bryce was Super Mario, Cole was Luigi and Trey was a mushroom.  They were adorable!  All the boys had a great Halloween and we were thrilled to have Trey home for his 1st Halloween!

Sunday, October 30, 2011

Please Pray...

I went shopping for all of our "necessities" today and got home very late to some terrible news.  I don't have it in me right now to write an update on Trey.  I feel as though I have just had way too much laid on my heart in such a short period of time and it literally hurts.  A friend of mine in Christ that I can truly say "she amazes me" lost her husband yesterday in Afghanistan.  She is in my small group and have met with her every Wednesday until September 12 of this year for I can't remember how long... 18 months or so?  Her husband was deployed a little after Trey had his surgery.  Even though this entire thing with Trey has taken over much of my mind, she was always thought of.  I remember thinking, goodness... this is what it must feel like for her... not knowing if your child (in her case, her husband) was going to come back to you alright or not.  My heart breaks for her.

So, I will write an update on Trey tomorrow... but please, pray for my friend August tonight.  She has 2 young boys.

"The unfailing love of the LORD never ends! By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, 'The LORD is my inheritance; therefore, I will hope in him!'   The LORD is wonderfully good to those who wait for him and seek him. So it is good to wait quietly for salvation from the LORD.  For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love."
Lamentations 3:22-26; 31-32

Please take a moment to pray:

Dear Lord,
Please help August in this time of loss and overwhelming grief. I don't understand why her life is filled with this pain and heartache. Her heart has to be crushed right now, but I know that you will not abandon her. Please show her your compassion, Lord. Help her through the pain so that she will have hope in you. I believe this promise in your Word to send her fresh mercy each day.  I trust your great love will never fail her.  In your name, Amen.

Day 4 (home, take 2) - Partying with the older boys...

We had a good day today.  At least that's what David says.  He spent the majority of the day with him today.  I went to a party with the older boys at Chuck E Cheese today and we had a good time.  Bryce loves it there and earned about 300 tickets.  I loved watching Cole figure the games out.  He's been a few times before but he's really getting a handle of the games now.  He loves the games that involve baseballs, basketballs and bowling balls.  When it was time for lunch I told Cole we were going to have pizza and he ran back to the tables gleefully yelling "pizza, pizza!" all the way back.  He was so excited.  He scarfed down the pizza - quite the opposite of his older brother who I think had maybe half a piece of pizza.  They both ate the cupcake but Cole savored every crumb.  He was still at the table finishing his cupcake long after everyone had left to play games.  He was covered in icing!

Trey threw up after his 6 pm feeding tonight and Cole was so good at helping me clean him up.  Trey was all smiles at him as well. I love that our boys seem to love spending time with each other.  The whole brotherly bond is pretty cool.  Bryce and Cole have this unspoken ninja stealth brotherly thing  It's so cute to watch  Cole just looks up to his brother so much and wants to do everything he does.  I can't wait to watch that bond form between Cole and Trey and also Bryce and Trey.  Tonight Cole helped me give Trey a bath.  It was adorable.  Cole was trying to show Trey how to splash in the water.  Too cute.  I love my boys!!!