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, October 7, 2011

Day 25 - 9:00 pm - Bottle Feeding!

So as of now the there is nothing more the hospital can do with Trey's heart.  It's stable and working.  It's as good as its going to be for now and hopefully will keep getting better over the next few months and years.  So from a cardiac viewpoint he could probably go home.  What we need to work on right now is getting him back to feeding and to make sure that he is gaining weight.  That is what we're working on now.

Today he met his goal of 35 mL/hr of milk and they ended up upping it up an additional 5 mL to top it off at 40 mL/hr.  Then it was time to compress his feedings.  Over 3 hours he was getting 120 mL and so they are starting off compressing that all into 2 hours instead of 3.  If he can tolerate that they will go up to 120 mL in 1 hour tomorrow and then eventually 120 mL in a half hour.

Speech therapy came by today and evaluated his suck and swallow.  It's definitely a bit weak right now and he was not interested in the bottle whatsoever but since he was being fed continually, he wasn't hungry so was difficult to say if he just couldn't swallow or just didn't want to.  Tonight they stopped his feed at 6 and instead of starting it at 7 they were going to stretch it to 8 so that the feeds wouldn't get stuck during nurse shift changes (they change every 12 hours).  It was the perfect time to see how he would do with the bottle!  He ended up taking about 29 mL (or 1 oz) by mouth and then got pretty tired... but he seemed to remember how to do it!  It took a little coaxing but he did it!

They keep talking about possibly coming home on a feeding tube for parts of his feeding but my goal is to be off that feeding tube asap!  I have a feeling that when he can tolerate bigger feeds all at once and gets more hungry in between them that he will take his bottle just fine and then will be able to go back to nursing.  Speaking of the feeding tube... they taught me how to administer his medications via the feeding tube and how to check to make sure the tube is still in the right place.  Basically, you push a syringe of air into his tube and listen to his belly via a stethoscope.  You know it's in the right place if you hear a whoosh that sounds like, well... excuse my bluntness, but a fart.  As Suzannah, our  nurse today, was explaining what it sounds like I heard it and said out loud... and of course, louder than normal because I had the stethoscope in my ears... a sound like a fart, right?  Yes... you can tell that I live with all boys at home (and a girl dog... thankfully there's one being in my house that doesn't announce their bodily noises out loud).  I just seem to blurt things out here.  Once you know that the tube is in the right place, you can insert the syringe with the medicine and push it into the tube.  After that, you use a put a syringe of water into the tube and put that in so that the medicine is completely flushed into the stomach.  People keep mentioning that I'm going to have to learn how to put the tube in... but I'm not even thinking of that right now.  If it ends up I have to... I will, but for now... I'm not going to worry about it.

Yesterday I brought back the hat that was donated to him from Healing Heart Headwear so he could try it on.  Now that the wires and tubes are disappearing it's easier to get things on his head!  The hat is absolutely adorable!  Sara, one of the echo specialists here at Inova, started the charity and the hats are all handmade with heart added to them.  It definitely will be cherished!  My youngest was a preemie, born at almost 33 weeks, and he spent a few days in the hospital (very few though... only 9, he was a fighter!).  In the hospital he was given a handmade blanket that was donated to him from Project Linus .  It is the mission of Project Linus "to provide love, a sense of security, warmth and comforts to children who are seriously ill, traumatized or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteers."  Since Bryce was born early I hadn't had any baby showers yet so we didn't really have anything.  The afghan was his first gift he received.  I was so touched that someone put the time and effort into something to donate it to someone they didn't even know.  It meant so much and it is still one of my most cherished pieces.  All 3 of my children have been photographed with it.  This gift from Healing Heart Headwear is now just like that afghan.  I am so incredibly touched that Sara took the time out of her busy day (she has a 2 yr old and 5 yr old as well!) to make something so special for Trey.  Thank you Sara!!

We also had some very special visitors today!  It was a busy day.  First, my fabulous neighbors, Jackie and Diana, came to see us.  It was so nice to see them, especially since I really haven't been home in almost a month now (I go home at night, usually around 9 pm and leave for the hospital around 9:30 am after getting my oldest off to school and the middle to my in laws).  Then my dad came up to visit and have lunch with me.  Unfortunately, by this time Trey had been awake all morning and so he was dead asleep the entire time my dad was here.  Then Hannah and Savannah came to visit us.  They're so much fun to talk to and I am so glad to have them as a support in the hospital.  See - God really does place people in your life.  They have made this entire stay bearable.  Later in the day I made a visit to the PICU and also talked with Holly, another one of his nurses.  She was glad to hear of his progress.  Oh yes, and Dr. Shen came to see us right when I got here.  He's pretty happy with Trey's progress and it's always nice to talk with him.  

Trey and my Dad

Trey has been sleeping VERY soundly today and his heart rate and respiratory rate have been "normal" for a sleeping baby.  His heart rate had been hanging out at around 130 when he slept and respiratory rate around 40 when sleeping but today it has dropped down to around 110 and mid 20's.  Since that's "normal" I'm hoping that this is a good sign, that his heart is recovering but since it seemed to happen overnight I'm a little bit nervous.  Not enough that I'm very uneasy... but enough that I'm noticing it a bit.  His sleep is a lot more deep too than it has been and his pain medications are now being decreased so I'm a little weary.  He is also having a lot of PVC's today or premature ventricular contractions (early heartbeats), which could mean something but most likely doesn't mean much.  They can be caused by having a low potassium (should I sneak him a banana?) or some other levels but they haven't taken a blood draw from him to check that yet so they're not too worried about it.  The nurse didn't seem worried about them at all but keeping an eye on them to see if there is a trend.  Right now they're not affecting physically, his oxygen level is good, his heart rate is good and he looks good to the eye.  The nurse did turn off the monitor in the room to keep me from worrying because it does alarm every time he has one and so it just beeps, beeps, beeps!  I turned it back on though because I'd rather know what's going on with him.  As Dr. Futterman told us when we first were admitted, "we work as a team"  in Trey's care and I don't want to be left out of the loop.  While the alarms are um, well, alarming... I'd rather know about the PVC trends than not know.  I can keep track of them with the monitor on.

Well, it's getting late now.  It was a busy day so I didn't have much time to update the blog today and I wanted to get it done before I headed home.  Trey's goal tonight is to keep compressing his feeding times, while my goal is to get home to watch last weeks Greys Anatomy!

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