Cardiologist Appointment

I LOVE going to the cardiologist.  I always look forward to Trey's cardio appointments.  Whether good or bad - I want to know what's going on.  I hate not knowing.  At the appointments I either get reassured that he's doing ok or I get news that something has to be done to fix him.  Thankfully, we've only had 1 bad "appointment" and that was his first ever appointment.  Looking back though, it wasn't really a bad appointment.  The doctor was surprised at how "well" I took in Trey's diagnosis.  The nice thing about the entire ordeal was... ok, so yes, something is wrong and well, this is how we're going to fix it.  Personally I found it so much easier to take in that he had a heart defect than it was to take in that he had Rhinovirus and we just have to ride it out.  It was nice to get a diagnosis that could be fixed.

Trey's cardiologist is awesome.  I don't think I will ever forget meeting Dr. Callahan.  We were at Montgomery General and he came from his Rockville office after hours to come do an echocardiogram on him in the ER.  He was really calm through the whole thing and extremely helpful when Trey became pretty fussy towards the middle of it.  He never seemed to get frustrated with the fact that I just couldn't get him to stop crying and I was definitely getting flustered!  During the echo he talked on the phone with his family, discussing time outs and asking his daughter what mom had said about the issue.  I really liked that he seemed to be a real family guy.  He asked about our family and since then he's called my kids uno, dos and tres.  When he gave me the diagnosis, he gave it to me straight and definitely helped me try and understand what was happening.  I remember him telling me what was going to happen and that when Trey left the hospital he was going to have to take lots of medications for awhile.  I'll never forget just looking at him and saying, "what am I going to do with the dog??  I can't even remember to give the dog her medication!"  That definitely should have been a clue to him that I think a little different than most people!

Needless to say, Dr. Callahan rocks.  The only thing I fear at the cardiologist appointments is that I won't be able to keep Trey from fussing during his echocardiograms.  He's getting older now and a little less patient.  Yesterday he did definitely get fussy and the Wiggles video that was on was just not keeping him entertained.  The next thing I know, Dr. Callahan is dancing (yes, dancing!) in and out of the room to the Wiggles music to entertain Trey.  Trey is my 3rd child - even before this heart thing we've had our share of Dr. appointments and ER visits.  We have never had a doctor dance and parade through the room like Dr. Callahan did... just to keep my child happy!  Seriously, he's awesome.

I do have to give props to his echo tech and exercise physiologist as well.  They also did an awesome job at keeping Trey entertained.  His echos aren't the quickest thing in the world... plus they're not the most comfortable thing either!

Waiting to get set up for his echocardiogram

The beginning of the echo

Waiting for the EKG

All hooked up!

During the EKG

And what you've all been waiting for....

Trey's heart function stayed about the same... even off of the Enalapril and Lasix!  Yay!  Trey is now almost 10 months old (on the 24th) and we are 7 months post surgery.  He is doing SO much better than I could have even dreamed about 7 months ago.  He does have some scar tissue on the back of his heart and his mitral valve is a little leaky but right now those things aren't anything to worry about.  Dr. Callahan did mention that down the road it is possible that his mitral valve could have some issues... but then again, maybe not.  So right now - it's a non issue.  He's doing GREAT!

Dr. Callahan saved my son's life.  There are so many people that have had a hand in saving Trey but Dr. C diagnosed it and has been there with us from the beginning.  The course of treatment Dr. Callahan followed has been ideal.  I couldn't be happier with how things have worked out!!  Thank you Dr. Callahan!!

A Long Overdue Update...

Wow, I haven't updated in a month!  Things have been just plain busy.  It's amazing how much crazier things get with just 1 more child in the house.  Before Trey I used to stay up way too late doing digital scrapbooking and getting things done around the house.  Now, I just can't seem to focus on anything.  Before I know it it's 10 o'clock and nothing has gotten done - by that time all I want to do is sit down and watch 1 TV show from the DVR because by 11 pm I want to be upstairs getting ready for bed, doing yet another bottle feeding and getting to sleep.  I have no idea what goes on between 8:30 and 10 o'clock pm.  It's checking emails, writing emails, looking at the calendar and figuring out schedules, working on MOPS stuff or looking at boy scout stuff for Bryce.

There really hasn't been too much going on in the world of Trey during the past month.  His feedings are getting better.  He's up to about 1000 mL's (or 33 ounces) of formula a day which is HUGE for him.  He's eating 3 meals of solids now and he seems to really enjoy them.  We saw the gastro at the end of March and she was a bit worried that he hadn't gained that much weight.  He was still hanging out at around 18 lbs (for a little over a month).  I had decreased the calories in his formula from 27 kcal/ounce back down to normal, 20 kcal/ounce, because he got way constipated for awhile.  She wanted me to go back up in calories but I just had a gut feeling that it wouldn't be good for his system.  He started taking miralax to loosen up his stools but even that really hasn't worked so I've been hesitating upping the calories of the formula again (that can cause constipation as well).  Well - we went to pediatrician on Tuesday for his 9 month checkup and vaccination and wouldn't you know it.... he is 19 1/2 lbs!  He gained 1 1/2 lbs in about 2 weeks.  That's really good.  So, I've decided I'm going to keep the formula concentration as is and not up calories.  By the calculations she gave me... now that he's up to 1000 mL a day and if I can keep all 3 meals at about 70 calories each he gets 876 calories a day.  His caloric need for his weight (19.5 lbs) is estimated to be 868 (according to livestrong.com).  So he's finally doing just fine in the eating department!  He'll still leave an ounce or so at the end of the bottle if it's left up to him to eat but if I hold him and sing "I've been working on the railroad" he'll finish it up just fine.  I have no idea what in the world his fascination is what that song but since coming home from the hospital it's the only thing that has been able to get him to eat... and trust me, I've tried other songs... it's just that one that will get him gulping!

We actually just got back from Fort Myers, Florida on Monday.  The boys and I went down with my mother for spring break.  It was a great week!  The boys had a fantastic time playing in the sand and water.  Trey really seemed to enjoy the water.  The first time I put him down in the gulf it was a bit overwhelming.  I just kept thinking how thankful I was to his cardiologist for seeing his problem.  If it hadn't been seen, we wouldn't have been sitting in the water together.  I thank God daily for putting so many specific people in our life that helped Trey get fixed up and healed.  We really have had such great experiences with not only his cardiologist and surgeon but we were blessed with so many fantastic nurses, therapists, echo-sonagraphers and so many more people we've met along the way that have had a hand in helping us through this.

As for now, it's officially 10:25 pm and I am late in getting downstairs to watch a TV show with my husband.  An adult show is definitely a wind down activity for me.... adult in meaning, Grey's Anatomy... not Yo Gabba Gabba or Power Rangers!  I'll write more about our vacation and Easter another day because I'm just exhausted right now but I'll leave you with a picture of Trey enjoying his first time ever in water other than a bath.

Superwoman

Today I feel like Superwoman!

This week I've really been trying to be more motivated in getting things done in the house.  At the end of last week I did a total overhaul (well not total... but pretty big) of upstairs.  I just put everything away and cleaned everything off.  I just couldn't live with seeing "stuff" everywhere!  This week I've been able to keep it up pretty well and tomorrow I'll be able to dust/vacuum/straighten up pretty easily!  I've stayed on top of laundry pretty well and the only mountain we have is dark wash, which I plan on getting done in small loads (our dark wash is a daunting task since I'm pretty specific on how it needs to be dried for only 10 minutes and then hung up a certain way... plus, certain pants and shirts have to be stretched before they can be hung up so that they don't turn into capris or elbow length items... I'm tall).

Today (yesterday too) I just feel as though we lived a pretty full life AND the house isn't a total disaster.  I stayed relatively sane and organized.  I'm pretty sure it also has to do with the weather too though.  The weather here has been gorgeous.  Sunny and upper 60's.  We spent time outside and took walks. It was nice.

I have to admit though... most days I don't feel like a super anything.  I struggle with getting things done.  I have a hard time functioning when things clutter up the floor and the counter tops - which they usually do.  I have my up days and down days (as well as up and down in a single day as well!).  But today I feel great.  I feel accomplished.  

Another reason for feeling good is that I've slowed down my "projects."  I take on way too many projects.  I stay up way late (anywhere from 1 to 3 am) trying to get things done.  Instead now, I'm getting more sleep on a regular basis.  I've been limiting myself to straightening up, watching a TV show before bed and then going to sleep!  I'm not getting on the computer to get something done.  I haven't started figuring out when teacher appreciation day is and getting letters written to Bryce's classmates to do a small gift.  I haven't done the MOPS newsletter that I so would love to get created.  I haven't sat in front of the computer wondering when I'm going to get my next scrapbook page done.  PLUS - I'm OK with that all right now (so not like me!).

(Sidenote:  speaking of projects though, I did do one small project last Friday night.  I made those capes the boys are donning in the picture above.  Cole was invited to a superhero birthday party and instead of buying him an expensive costume to wear that I know he'd ruin I made him his very own felt non-sew superhero cape.  I even ended up having enough felt left over to make Bryce one as well!)

God is definitely whispering in my ear.  He's telling me to slow down.  By slowing down he's been giving me the energy I've been praying for to get the house somewhat put back together to how I need it to be (um, well, next weekend we focus on dusting downstairs!).  He's given me the energy to take the 2 little ones to the grocery store (our free delivery from Peapod has run out).  He's given me the energy to not drag in the morning and enjoy Trey's new little sounds.  God definitely amazes me.  I prayed and prayed last week for the energy to be the mom I want to be.  

There's still a huge way to go... we have a lot of home projects that need to be tackled this spring and we've put off for a few years now.  It will be harder to get them done with 3 kids instead of 2... but I trust He will inspire me to get it done.  We now have 3 little blessings and I want to be able to have a backyard (as opposed to the swamp it is now) to do things in with them.  

No, I understand this post isn't much about Trey - who is doing great by the way!  It is however, part of my journey with Trey (and my other boys).  Not only am I learning how to live life with 3 very boisterous boys but I'm having to learn how to live without worrying about Trey's health all the time.  He's eating well, he's coming off his heart meds, he's off the feeding tube... he's doing fantastic!  However, every small strange sound or movement he makes could be a sign of something... but I'm re-teaching myself that babies are also just babies.  They sometimes make odd sounds.  They sometimes spit up for no apparent reason.  My personal journey to fixing Trey's heart is to learn how to live with it instead of in fear of it.  This part is a bit hard - but I'm definitely getting there.  I don't feel as though I have to shelter him from everything.  I've been taking him out and we've been living our life as a family again.  Things are moving on... all thanks to God.  He has helped us through this journey and he will continue to be with us as a family.  

Today I feel like Superwoman.... walking side by side with my Super God. 

Our Journey at Inova through Pictures

For some time now I have wanted to post some more pictures of our time at Inova.  I don't want to post them on the main page though because most of them are quite graphic and may be disturbing to some people.  I wanted you to get an actual idea of what we experienced while we were there.

The experience was surreal.  Unbelievable at times.  It was a lot to go through as a parent.  I wouldn't change it for the world though.

So without further ado...

(disclaimer... do not click on this if you cannot handle pictures involving blood or sutures)

Our Journey at Inova through Pictures

(the pictures are in chronological order... click on the 1st picture and continue from there)

Gastro Update

The gastro dr. went well the other day.  Apparently Trey baffles her.  Trey didn't even gain 1 full pound while on the NG tube, but since going off of it he has gained 2 pounds.  Yet, takes in very little calories.  According to the numbers he shouldn't be doing as well as he's doing, he shouldn't even be hydrated... but he is and he's gaining weight.  Go figure.

She is having us up his calories again from 27 kcal/oz to 30 kcal/oz.  She just wants to make sure he gets enough calories.  Since he's gaining weight she doesn't want to put a feeding tube into his stomach, even though the amount he takes in warrants one.  We are giving 2 mL of mylanta before every feeding to see if that helps with the reflux (it coats the esophagus) and she had him get a blood test to check his electrolytes and such.  She also wrote an order for Trey and Cole to have a stool sample tested to make sure they don't have any bacteria (they both have diarrhea pretty bad still).

Apparently his upper GI series showed that his duodenum was a little misshapen.  This is the part of the small intestine that attaches to the stomach.  She wants to repeat the upper GI when he is a year old to make sure that it is growing normally with his body.  If he remains extremely fussy she said that we can repeat it sooner and also do a study of the lower bowels.  Basically, we're still just watching him and keeping options open.  We go back again to see her in a month.

I think we actually have a break from doctors this week!  Not one appointment scheduled.  Wow!  

Pediatrician Appointment last Friday for his Synagis (RSV) Injection

18 pounds!

Happy baby - he has no idea what's coming.

Synagis Shot #1

Synagis Shot #2

Trey's top 2 teeth broke through!

The poor kid has been extremely fussy this entire past week.  I'm really hoping that maybe this week his stomach and teeth will feel better and he won't be as cranky.  Last week involved a lot of screaming.

5 Months Post Surgery

Wow, I haven't updated in awhile.  There's SO many reasons for that.  Things this month have been a bit hectic and a bit uneventful at the same time.  The beginning of the month started out well.  Towards the middle of the month I started a huge push to get Bryce's classroom Valentine's Day Party organized.  That took a lot of time. It ended up taking a lot more than I had expected.  I have some other little projects going on as well, so with the added party and trying to keep up with "the norm" things got out of hand.  Then - the stomach virus hit the house.  The past week has just been a nightmare.  

Bryce woke up with it first the Friday before Valentine's Day.  He only got sick once thank goodness - but it was all over the room so there was a lot of cleaning up to do.  Thank goodness for our carpet cleaner!  He seemed to do ok over the weekend but then it hit him again on Monday.  He stayed home from school on Friday and Monday but was ok for the class party on Tuesday.  

Monday night, it hit Cole as David was rocking him to sleep.  All over the carpet and down the hallway, then again all over the bathroom.  I couldn't believe it.  The poor kid took it rather well though.  He went to sleep even with the loud carpet cleaner growling in his room.  So that took up most of the night, but I still had to finish getting organized for the Valentine's Day party!  I ended up going to bed around 4 am.  Let me tell you - I am getting old!  I used to be able to recover from that in a day or two - but no, I was feeling that loss of sleep for days!  

Tuesday after the party at school (which ended up going spectacular, thank you!), Trey let loose all over me right before we were to go out to eat.  That plan quickly changed and did carry out instead.  I got changed, got Trey changed, we both got cleaned up and he let go again.  He was not a happy camper.  

Thankfully, that was the end of the boys getting sick that way, but it then started out the other way.  Poor Cole and Trey!  It was a rough few days and the younger ones are actually still going through it.  Friday, the hubby came home not feeling so great and sure enough, in just a short few hours... I thought he was going to die.  I've never seen him so sick.  The poor guy was moaning in his sleep.  I took the kids to my parents on Saturday to give him a break and guess what?... yup, you guessed it, I ended up coming down with it next.  Thankfully David was feeling a little bit better and he took the kids to his parents the next day to give me a break and recover.  This stomach virus was no fun!  48 hours later and I think I'm feeling somewhat normal again.  Still a bit nauseous but I can function.  

Trey had a dr. appointment on Friday for his Synagis injection (RSV prevention) and we ended up back in the office today.  The poor kid had been sick all week but started getting especially fussy over the weekend.  It started Friday night and he just couldn't calm himself unless someone was holding him.  That makes it a bit hard to accomplish anything!  The pediatrician thinks that it's still the virus working it's way through him that is making him so fussy.  I just wanted to make sure his ears were ok and there wasn't anything I was missing.  I tend to avoid the dr's office because usually I know it's just a virus and there's not much that can be done for that.  The Dr's office is just germy.  I'd rather them not pick something else up.  Totally different with Trey though - I call or visit about everything!  With him I think I feel as though since the heart thing was missed, I just don't want to miss something else.  Like he's got another health mystery that's going on or something.  Anyhow,  they told me to put the kids on probiotics to help with their current issue.  Hopefully that will help.  

So for the past week things have just been really, really hectic and I feel like the house has just fallen down around us.  There have been some other small events happen that I wanted to blog about (I made baby food!) and have taken pictures of (I designed some shirts for the family to wear on Tuesday - Congenital Heart Defect Awareness Day!) but I just haven't had the time to upload the pictures or organize my thoughts... and I still haven't.  

This week though - we've got the Gastro Dr. on the schedule for Thursday.  Trey's feeding has been all out of sorts due to the stomach virus so it will be interesting to see what she says.  I've also noticed that his stomach noises have gotten rather loud and you can hear the sounds of liquids sloshing around echoing out of his mouth.  It's rather strange.  We had started thickening his formula with rice cereal but that ended up constipating him so that didn't work so well.  The one nice thing about the stomach virus was that it unblocked him.  

The other thing I'm doing this week... I'm going to try and take back my house.  Each day I'm going to pick a room and go through it.  Things just need to be cleared out.  I started a bit today but didn't get that far because my stomach was acting up.  However, I did bag up all of my maternity clothes to be donated.  I thought maybe it might be upsetting... but no, I'm done.  I didn't feel finished after Cole... I do have to say though, after Trey... I'm pretty sure that our family is complete.  I'm ready to start giving things up and moving down the road of our journey.  

Oh and wow - forgot to mention... on Valentine's Day... Trey was 5 months post surgery!  I am going to make his ECMO follow-up appointment at Inova this week!  I'm not sure exactly what that is just yet but when we left they told me not to forget to make the appointment with the Physical Therapy Team at the hospital.  I expect they'll just make sure that his function is ok and that the ECMO didn't have any negative effects.  I'll find out more about that visit this week as well.

I'll post more after his trip to the Gastro on Thursday and hopefully by then I'll have time to get my pictures uploaded from the camera!

The Faces of CHD (to honor American Heart Awareness Month - February)

In the past few months I have learned more about the heart and heart defects than I have learned in my entire life.  I've learned things I can't believe I now know!  I watch Lang and Altman (the cardiac surgeons) on Grey's Anatomy and I now can understand what they're talking about!  Not like that's anything amazing... but before Trey's heart condition - it was all just jargon to me.

I've started following blogs of sick children, periodically stop and pray for them during the day and am wondering how families I've never met, but follow through blogs, are doing now that they're out of the hospital.  It's a totally different understanding.

I've learned to survive in a NICU/PICU/hospital.  Heck, I lived at Children's Hospital with no TV and no food or drink allowed in the room for an entire week.  The whole time just watching my sick child suffer - totally unaware that he was most likely having small heart attacks and slowly falling into heart failure.  I watched my child's blood come out of his body through tubes, passing through a mechanical pump and lung and then returning to his body through his open chest.  I watched my child get soaked in blood when he started bleeding out of control (thank goodness I wasn't totally aware of what was going on until after the nurse had gotten it under control!  His gauze had already been a little bloody from the surgery and I had been warned he'd bleed due to the heparin, blood thinners, he was receiving so when it was dripping down the sides of him I just thought it was "normal"... as if there's such a thing!).  All of this has changed my view of being "sick."  I can now see it through an understanding.  I always knew it must be difficult to see your child like that, to live that way... but now I really know.

My child is my hero.  All my kids are my hero in different ways - but Trey... he's caused me to really want to change myself physically.  During the past 4 weeks I've been doing the Couch to 5K running program.  I am so not a runner.  I've always hated running.  My shins and ankles hurt when I run.  Well, Trey's hospital is sponsoring an 8K in April and I am going to run it (well, run as much as I can by April!).  I've always been a walker.  I can walk fast but I am now challenging myself to go beyond myself... and run.  I went and got fitted for running shoes through a running store, I downloaded a podcast on my iphone to help me train and I just started running.  And do you know what?... I can run!  My shins have been doing fine, my ankles are good and I'm enjoying it!  I really like running after dusk (I run the main road up and down in the streetlights on the sidewalk) so that people can't see how much I'm suffering and when I feel like I'm just going to fall down or give up... I think of Trey.  If he can make it through heart surgery, ecmo, open chest, drug withdrawal, a feeding tube for 4 months and painful reflux... I can learn how to run.  I can push myself past what I thought I could do and better my heart as well.  Heart Disease is the #1 killer for women in America.  Exercise can help prevent it.  I can definitely better myself for him - because he did it for us.  We are so much better because he is in our family.

Anyhow, I'm moving away from the point of my original post.  According to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)  February is American Heart Awareness month and, specifically, February 7-14 is Congenital Heart Defect Awareness week.  In honor of this, 3 heart mommies...

Ruth from A Trip to Holland
Becca from The Stanley Clan and
Stefenie from When Life Hands you a Broken Heart

... have set up a Pinterest board to highlight "The Faces of CHD."  It is a virtual bulletin board of children (and some adults) that have had their lives changed through being born with a heart defect.  It's amazing.  It really is incredible to see the pictures of all these amazing children that have gone through so much in their short lives.  Not only that but the amount of different heart defects that are out there is mind boggling!  This little organ in our body can create so many problems (granted - it's one of the most important organs in our body to keep us living so that makes sense - but it really is a simple machine - it pumps blood through our body, that's all - but there's so much that can go wrong with it!).

So please, hop over to The Faces of CHD and check out the pins.  Everyone of them has a story and it's an amazing one.  While you're there you can see Trey's picture.... a proud survivor of a congenital heart defect.  He's come SO far in such a short time.  My little heart hero....

To any new readers... Trey was diagnosed with ALCAPA (a RARE congenital heart defect... 1 in 300,000) at 11 weeks late afternoon on September 12, 2011.  He had a heart catheterization procedure to double check the diagnosis on September 13 and the surgeon cleared his schedule to operate on Trey early the next morning, September 14.  ALCAPA stands for Anomalous Left Coronary Artery from the Pulmonary Artery.

Basically, the coronary artery normally comes off of the Aorta and supplies the heart with the oxygen enriched blood it needs to survive and do it's job.  Trey's coronory originated from the Pulmonary Artery instead.  The Pulmonary Artery takes blood that is deprived of oxygen (after it circulates the body) back to the lungs to pick up more oxygen.  Therefore, Trey's heart was getting blood that contained no oxygen and therefore, the left side of the heart (the side of the heart that pumps the blood through the entire body) was essentially dying.  He went into the hospital with his heart working at 7% (ideal is 70%).  He was in severe heart failure.

In order to fix the problem he needed open heart surgery to move the coronary artery from the Pulmonary Artery back to the Aorta.  Sounds easy, right?  Not always so easy.  Unfortunately, where it has to be connected is towards the back of the heart so when the heart is placed back into the body the surgeon is unable to see if the tiny coronary artery is kinked or not once the blood starts pumping back through the heart after surgery.  So they do all of the plumbing work but once it's back in they're blind to if it's actually fixed or not.  A kink meant - he would probably not survive.  Thankfully... Dr. Irving Shen rocked the surgery and all was fixed the way it needed to be!

This blog documents Trey's (and my family's) journey through the entire hospital stay.  I blogged my way through a month at Inova Fairfax hospital and the past 4 months of recovery at home (on a feeding tube... now completely weaned off of!).  To read our story from the beginning click here and then keep clicking on "newer post" at the very bottom of each post.

30 days without the feeding tube! - LOTS of updates!

Wow, I haven't posted in about 2 weeks.  It's been a busy here!  Lots of doctor's appointments and just some overall BUSY!  Here's what we've been up to:

Trey is rolling over!  He can roll over, to the left, most times (sometimes he needs some help getting over his arm).  He can also roll back to his back as well.  He's still not really liking tummy time but he's getting there!

Trey is also getting a lot more interactive with toys.  He really, really enjoys this walker he got for Christmas.  He'll bang on it and listen to the music.  Cole just thought it was the funniest thing!  He got a kick out of watching his brother play with something while sitting up!

Tuesday, January 17 - Pediatrician appointment for Synagis Injection (to prevent RSV).  Trey weight in at 16 lbs, 11 oz.  Head circumference is still ok.

Wednesday, Jaunary 18 - Upper GI Series at Johns Hopkins.  My mom went with me to the appointment because I was a bit nervous to be in the hospital again.  I wasn't quite sure what was going to happen.  I knew that he was going to have to drink some barium and they would take x-rays of it going down to his stomach and then into his duodenum (the beginning of the intestines).  Other than that though, I was pretty unsure of the process.  I didn't know how much of the barium he would have to drink and I was nervous that he wouldn't take any of it.  I wasn't sure if they would have to sedate him a bit or if I'd be in the room or not.  So I was pretty nervous.

Johns Hokins is a huge hospital and I ended up parking in a parking garage that wasn't so close to where we had to go.  I got a little lost but eventually found my way.  My mother met me in pediatric imaging and we didn't have to wait long at all.  The procedure ended up being a lot easier than I thought it was going to be and Trey was pretty laid back about the entire thing.  Really, I think he just enjoys being in the hospital!  He was an absolute charmer!

We were able to be in the room during the entire procedure and he ended up only having to drink 10 mL of barium to get the images they needed.  They placed him on his back and put a large x-ray machine over his throat/stomach area.  The tech fed him the bottle while I kept his legs from moving around (he really, really wanted to chew on his toes!).  The x-ray machine took an image every few seconds and it was pretty interesting to watch the barium go down the esophagus into his stomach.  We got the results pretty quickly - no obstructions or problems on the way down to the stomach and the stomach emptied out ok into the duodenum.  There was some reflux shown on the images but the test was mainly to rule out any obstructions that could be causing problems with feeding.

Positioning the x-ray machine, the gel bags are to keep his arms from moving around too much (like in the next picture!)

Loving the gown!  Look at those feet and arms moving!

The x-ray machine

Trey eating the barium and getting "x-rayed."  My mom is to the left of the picture, the tech is feeding Trey and the radiologist, to the right, is looking at the images.

A closer view - you can see Trey's head.

Friday, January 20 - Trey had his first session of Physical Therapy through Montgomery County Infants and Toddlers!  He did ok.  He got pretty hungry and tired half way through so he was a bit fussy towards the end.  We need to work on tummy time.  She wants us to do tummy time once every waking hour.  Um, yeah... my goal is twice a day right now.  She recommended timing it and extending it by 15 seconds every few hours.  I make sure he gets tummy time about twice a day and he rolls around and does his own tummy time a few times a day.  So, I'm close to every hour!

Over the weekend we took the boys to Picture People to try and get a photo of all 3 of them.  I knew it was going to be awful... and yes, it was.  It was a nightmare to even just get the boys cleaned up and dressed in order to leave the house without getting snot or drool all over everything! (well, that's for the 2 younger ones.. Bryce is pretty good at keeping clean when I want him to)  The photographer wasn't that great and Cole just didn't want to participate.  He cried most of the time.  My mother tried to get him to roll a basketball back and forth but that didn't really work so great either.  Never again!  The picture didn't turn out too bad though...

... considering it was truly one of the hardest things I've ever done!  The entire day was exhausting!

Sunday, January 22 - Both of Trey's bottom teeth broke through!  Tooth 1 broke through in the morning and Tooth 2 broke through in the afternoon.  Very exciting... but I also don't want him to grow up!  He's my last baby!

On Monday, January 23 Bryce had off of school.  I took all 3 boys for lunch to McDonalds and then to Michael's to get spray paint for Bryce's Pinewood Derby car.  It went well, considering it was just me and the 3 boys.  I think it was one of the first times I've taken them all out by myself.  I'm still a bit afraid of taking Trey out in public.  I don't want people touching him... or even breathing on him!  That's something I NEVER worried about with the other two kids.  I was so laid back with them - we went out all the time!  Very different this time around with the 3rd.

Tuesday, January 24 - We went to the cardiologist!  I love the cardiologist appointments.  It's when I get reassurance that he's doing ok.  Everyday I wonder how his heart is doing... when we're at the cardiologist I get to SEE how it's doing on the echocardiogram.  It was such an exciting appointment! His heart function was at 67% (remember, 70% is ideal) so it's still totally normal!  Amazing!  I was expecting it to go down a bit this time because he has gotten a bit bigger and I thought maybe the medicine wasn't as effective.  Nope, it's still perfect!  Plus, Dr. Callahan has starting weaning him off his medication!  He came off the Lasix and we were instructed to wean him off the Enalapril over the next few days.  Our next appointment with Dr. Callahan is in April and he'll stay on the same dosage of Digoxin (.05 mL, twice a day) until then.  The Digoxin is the medicine that helps his heart contract stronger.  As Trey grows, he'll naturally wean himself off of the medication.

Trey having his EKG done.

Getting ready for his echocardiogram.

 

Echocardiogram

Trey and Dr. Callahan!

Wednesday, January 25 - a Social Worker from Montgomery County Infants and Toddlers came to meet with me.  They had offered me the service during his evaluation and I figured I might as well take advantage of it.  She was a bit surprised to hear that we haven't really been going out too often, well... except for doctor appointments!  She gave me some great resources of things to do with Cole... things the county provides.  They have a playtime that involves circle time and stories that is perfect for Cole and we're able to attend that.  I definitely have to get Cole out more often... well, and myself.  It's a bit odd that I get super excited to go to a doctor's appointment!  It's about time we start doing some other things as well!  She gave me some things to work on this month and she's going to come back next month to see how we're doing.

Thursday, January 26 - Another doctor!  Today was the Gastroenterologist, Dr. Karla Au Yeung.  Great news.... he's gaining weight!  Slowly but surely... at least he's not losing!  Since he is gaining she feels more comfortable not putting a feeding tube directly into his stomach.  Yay!  She reiterated that his upper GI was ok and since he's not resisting feeding too much now she is going to put off having an endoscopy at this time. The hope is we won't have to do that.  We know he's got some sort of reflux going on so we're going to try and treat that.  She doesn't want to have to put him under anesthesia for the scope because he's had cardiac problems.  So for now we're sticking with fortifying his formula up to 27 calories per ounce and she gave me some other things to try if we would like.  We can buy some baby probiotics or try 2 mL baby mylanta before every feeding to coat his esophagus and stomach.  We'll go back to her in a month to make sure he's still gaining weight.  At that point we'll decide if he needs to see her monthly or less.  He's still on the Prevacid twice a day but we stopped the Zantac (by accident!).  We had to refill the Zantac but forgot to pick it up.  We ran out and gave the Prevacid that morning instead.  He seemed to do fine so we thought we'd see how he did that evening.  Again, didn't seem to faze him that he didn't have the Zantac.  So, we're sticking with just the 2.5 mL of Prevacid, twice a day for now.

Friday, January 27 - Yet ANOTHER doctor appointment!  Today Trey got his 6 month vaccinations.  He's about 1 month behind with his shots because of his stay in the hospital.  They also can't be too close to his Synagis shots so everything has to be timed.  Trey weighed 17 lbs 3 oz at his appointment today!  That's huge for him!  He's actually made it out of the 16 lb range!  Cole came with us today to his appointment.  He brought his Power Rangers.  Cole has been really, really into Power Rangers lately and they go everywhere with us.

17 lbs 3 oz!!  He LOVES playing with the tissue paper at the doctor's office!

Cole (2 1/2 years old) waiting for his brother to receive his vaccinations.

So - it's been a hectic few weeks!  He's doing well though!  We're SO excited.  I think we can successfully say...

18 days without a feeding tube!

The Christmas decorations are down!  Thank goodness.  I felt as though that chore was a huge load on my shoulders.  Now I just need to find homes for some more of the toys the boys received.  We had a good weekend as well.  Bryce called home a few times from Florida and it sounds as though he is having a great time.  He landed tonight at 9 and David went to go pick him up from the airport.  We had a nice weekend with the other 2 boys.  We went out to eat twice, which was really nice.  Cole behaves much better at restaurants when Bryce is not around.  Bryce just eggs Cole on and the two of them end up feeding off of each other.  Granted, he behaved like a 2 year old... under the table a few times... but at least no running around or screaming.

I got a message from the GI office on Friday afternoon that I didn't listen to until Saturday.  Apparently, Trey's upper GI series is scheduled for Wednesday at Johns Hopkins.  I know it's not a huge procedure and it will go fine but I'm a bit nervous about going back to the hospital again.  I'm not exactly sure what is going to go on - I know he will have to drink a bunch of solution and then they will x-ray it going through his digestive system.  I'm not sure if he will be lightly sedated, twilighted or completely put out.  Although, tonight was not a great feeding day so I'm eager to get this over with.  He would scream at the top of his lungs after 2 ounces of formula

Tomorrow we have a pediatrician appointment for his Synagis injection.  This is an injection to prevent Trey from getting RSV.  RSV is a virus that can cause runny noses and cold type symptoms in older children and adults but can be deathly for infants.  Wednesday we have the GI procedure, Thursday we have Speech Therapy and then Friday is his first Physical Therapy session.  It's going to be a busy week!

15 days without a feeding tube!

Trey's doing ok.  He's getting a decent amount of formula in each day, averaging about 700 mL.  This still isn't the ideal number for hydration (730 mL) but he's still not showing any signs of dehydration at all.  On Wednesday the home nurse came to check on him.  She still comes once every week although she didn't come last week because we had the GI (Gastro) appointment.  He's maintaining his weight and isn't losing so that's good.  She thought he looked hydrated, plus his heart rate and breathing rate were extremely normal which was great!  His respiratory rate had been high since before Children's and when we left Inova it was still in the upper 40's to 50's and while technically "normal" it was still high compared to the rates I was told at Children's.  He now breathes at a rate in the low 30's.

We also had the speech therapist from Montgomery County Infants and Toddlers come out for our first therapy session.  She gave me hints on how to help him find his lips to make consonant sounds.  She taught me ways to teach him the beginnings of communication.  Basically, I speak, you speak, I speak, you speak.  So after I talk I'm supposed to wait for him to respond and vice versa.  I also feel like I don't pay any attention to him.  She asked me if he banged on things yet with his hands and I said no.  Um, yeah, well at dinner tonight he sat in my lap and banged on the table over and over.  Yeah, he bangs on things just fine.  David just reminded me that we're more focused on him eating than the other kids so we tend to miss other things.  Did I notice he was banging on things?  No, because we are constantly focused on getting liquids into him.  It went well and I'm excited to see what we're going to do next week.  This week was more of an evaluation again.  Next week she is going to bring a cut out cup to see how he does with drinking from a cup... should be interesting!

There is some frustration though.  Last Tuesday at the GI appointment I was told it should take about 72 hours to hear back from the insurance and then the office manager would call me to schedule the appointment.  Well, I haven't heard anything from them since we were there.  I talked to the dr. on Monday and she said she'd look into it and if I didn't hear from her on Tuesday to call again.  I called on Tuesday and left a message earlier in the day.  Never heard from her.  Called again on Thursday afternoon - no response. Called again Thursday afternoon and finally got a hold of her at 4:30.  She had no idea who we were.  She got his file and there was no request for a GI in it.  Great.  Ok, so the dr. got busy... I can understand that.  What I don't understand is why she didn't call me back 2 days before that.  If she had called me back we could have gotten things moving 2 days earlier.  She just submitted to the insurance for approval today and hopefully we'll hear back from them on Monday.  We can't schedule anything until the insurance approves the procedure though.  Argh!  I did let her know my frustration though... nicely.  I asked her to please keep on top of this because this isn't just a "regular" reflux baby.  This is a baby that has been through open heart surgery... lots of pain..., a drug withdrawal and now has had painful reflux since he left the hospital.  I told her I'm tired of seeing my baby in pain and something needs to be done about it quickly to find out how to relieve it.  I hope I was heard.  We shall see on Monday.

In other news, Bryce is going to Legoland in Florida this weekend!  He left this evening with Grandma and are meeting Grandpa in Orlando.  He's been there since Wednesday for a conference.  I had told him a few weeks ago that he was going but haven't mentioned it since.  After I told him I thought... gosh, I should have made it a last minute surprise!  So since he didn't mention it again, neither did I!  So I picked him up from his classroom at school today with a big posterboard sign that said, "Surprise!  Bryce you're going to Legoland!"  He was thrilled, as was all of the other children in the classroom!  It was pretty fun.  I totally meant to take a picture of his face when he saw the sign but I forgot!  So I made sure to get one of him with the sign before we left for the airport.  He made it safe there tonight and heading to experience the new Florida Legoland tomorrow!

Yes, those are Christmas decorations in the background.  I have yet to take down our decorations.  I'm starting to wonder if I'll ever be able to find the time!  I'm thinking maybe in May?