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!

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!

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!

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.

EKG

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!

Echocardiogram

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!

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!    

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

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!

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.

Tubeless!

Tubed again.

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.

Ouch!

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!