Monday, March 31, 2008

He's a chunky monkey!

Monday Mar 31, 2008

He's a chunky monkey!

Okay, so I ran out of music lyrics. I couldn't think of any song lyrics relating to the topic except Weird Al Yankovick's "I'm Fat," and I already promised that I would avoid any more Weird Al songs. Why is it that his songs just seem to fit so well? Maybe it's because he and Jay have the same maturity level... who knows.

We have exciting news!! Jay went to the pediatrician today and he weighs a whopping 10 pounds 7 oz.! Yes, that means he's regained his birthweight and put on some extra. Feeding went really well over the weekend. He's pretty consistently getting 3 oz. per feeding, and thanks to the greatest lactation consultant on the planet, he's also attempting to breastfeed as well. (Thank you Moira!) While he's not getting enough to sustain him on breastfeeding exclusively, when you add the bottles that he's getting to the nursing, he's really eating like a champ. (Knock on wood that it lasts!) We go back again next Monday, so we'll have a better idea how well he's keeping that weight on.

Today is the first day that Jay and I are totally on our own, and I must say that I'm pretty proud of myself that I got him up and dressed, along with getting myself up and dressed (with a shower, no less!), and to the pediatrician by 10 a.m. So, maybe I can do this baby thing! He's sitting here beside me in the swing he borrowed from his good buddy Preston, and he is LOVING it. (Many thanks, Bethany! This thing rocks - literally!) My mom kept telling us that the bouncy seat was not enough and that we needed to get a swing - and she was right. (Yes, I was wrong and Mom was right - hard to admit, but sometimes it's true.)

Happy Monday, everyone!


I must say Jen, you are already doing better than me on most days! I am so happy things are going good with nursing and feeding in general.

Posted by Marcy McWhorter on March 31, 2008 at 06:38 PM EDT #

That's awesome! I'm so glad Jay likes the swing!!

Posted by Bethany Watkins on April 04, 2008 at 05:25 PM EDT #

Sunday, March 30, 2008

Don't tempt me...

Sunday Mar 30, 2008

Don't tempt me...

...I'm where I wanna be
Cause on the 8th day
God made Sweet Tea

Last night was an exciting night in Jay's life - his first time with a babysitter. My favorite band from our college days, Cravin' Melon, played their last show before splitting up about 7 years ago. Cravin Melon is a great live band - lots of energy and a ton of fun to watch. They played a reunion show last night at the Lincoln Theatre and we bought tickets way back before Jay was born. We figured he'd be at least a month old and we'd be perfectly happy to leave him with Jen's folks for an evening. We of course didn't expect that we'd have only had him home for a little over a week! I was a little nervous about leaving him with my folks. It's been 30 years since they had babies - would they remember what to do? They can't remember where they left their keys - would they forget where they left my kid? (Just kidding, Mom & Dad!)

But since this concert was truly a one time opportunity, we decided that Lala and Grandpa Mike could handle any eating issues as well as we could, and we headed out around 8 p.m. last night. I realized that this was the first time I'd been away from Jay since he was in the PICU. And I really was pretty good about being apart - I only made Derek check his phone (JUST IN CASE he'd missed it actually ringing!) about 15 times. That's not so bad, right? And I even allowed us to have a conversation about something other than milk, spit-up, or diapers. We talked about the fun times we had going to Cravin Melon shows in college, Derek's plan for going back to work this week, and taking Jay to the doctor. (Okay, so that last topic wasn't exactly romantic, getting away from the stress of baby conversation. We couldn't exactly go cold turkey thinking about something else!)

And you know what? We actually had fun. I heard someone say that the best thing you can do for your child is to spend time away from him to nurture your relationship with your spouse. And while it's so hard to find that time, I believe that's true.


Sounds like you had an awesome time! Hang in there this week!

Posted by Bethany Watkins on March 31, 2008 at 12:43 PM EDT #

I am glad you had a great time out!

Posted by Teresa on March 31, 2008 at 01:12 PM EDT #

Saturday, March 29, 2008

If I could save time in a bottle...

Saturday Mar 29, 2008

If I could save time in a bottle...

...The first thing that I'd like to do
Is to save every day
Til eternity passes away
Just to spend them with you

I can't believe we haven't posted on the blog since Monday - it is just amazing how fast the days go by. I start out each morning with a goal of something I want to accomplish for the day. These are NOT big goals, mind you - they are things like put away the laundry or unload the dishwasher. Then I blink my eyes and the day is gone and the pile of laundry is bigger than ever and there are even more dishes in the sink. I know that exhaustion is taking over when I can't remember the last time I brushed my teeth. (I know I have brushed them, I just can't remember actually doing it!) Everyone tells me that it gets better once he starts sleeping through the night, but I fear that is still a long way away! But I try to remember that the time when he'll wrap those tiny little fingers around mine is short and to enjoy these moments while I can (even the 4 a.m. feedings!)

Jay is still struggling to eat enough, and we're still working on getting him to eat like a 10 pounder. He is gaining weight, just VERY slowly. He saw his cardiologist again yesterday, and he seemed quite pleased with how he's doing. His heart is looking great and we're very thankful for that. He was also very optimistic that the laryngeal paralysis will improve on its own and that was certainly reassuring.

Several of you have asked about the name of the blog "Torquil's news." I didn't realize that my older posts disappeared after a certain amount of time. I started this blog early in my pregnancy before we knew if we were having a boy or a girl. You can find the original post that explains the name Torquil here. If you want to see other previous posts, you can click on the calendar at the top right to go back to earlier months.

Here's a new picture so you can see our eating struggles.


I love seeing pictures of Jay! I can't wait to visit next week. Have a fun night at the concert!

Posted by Lisa Jones on March 28, 2008 at 10:39 PM EDT #

I thought I'd check back on your blog to see how baby Jay was doing. I think for now, I like Baby Jay. A one syllable name is something to get used to. I like Jay, but for now, Baby Jay seems to fit. Maybe reminds me of baby Jesus, and it seems we've been coming to Him a lot lately on behalf of baby Jay, so maybe that's why it seems to fit. I can identify with you on the 4 am feedings. I didn't mind getting up as I also realized it too would pass. Every moment is for the enjoyment. You can not take these times back so savor them as them come.
I looked back at your original torquil news from the link. I don't know that a girls name would be that difficult for you at all. After all, there's always "Alice", and name your Mom and Appie share (and me :) ).
'til youtr next blog... Give us a call if we can be of any help.
Aunt Ali

Posted by Great Aunt Ali on March 29, 2008 at 10:38 AM EDT #

Monday, March 24, 2008

I like big butts and I cannot lie...

Monday Mar 24, 2008

I like big butts and I cannot lie...

Unfortunately, Jay's rear end is not a big butt. And none of his other parts are getting big either. He's still not putting on weight like he should and hasn't regained his birth weight yet. In a normal baby, the fact that he's still below birth weight at 2 weeks old wouldn't be a huge problem. But in a baby whose body is healing from major surgery, he needs more calories than he's getting for his body to recover.

So we are starting a two part approach - part one is adding powdered formula to the breastmilk he's already getting to add some calories. But part two is the fun stuff ... baby torture to keep him awake during feedings! My mom always says "Never wake a sleeping baby." Unfortunately, we're gonna have to wake him up if he's going to chunk up. We've already tried the easy approaches including mid-feeding diaper changes and frequent burping/position changes to try & keep him alert. Now we're moving on to the big guns - cold washcloths, naked feeding and toe tickling. Don't YOU want to sit there naked, shivering, and being tickled while you try to eat your breakfast?! Let the fun begin!

In other news, Jay went to his first party yesterday to celebrate Easter with his Raleigh extended family. He behaved like a champ! He didn't seem to care that we passed him from one person to another all afternoon/evening, and he happily sat in his carseat while we ate our Easter dinner. He made flirty eyes at all the ladies who would look his way. He's gonna be a party animal.


Even in the late hours and early morning we are all thinking of you little Jay! Keep eating and getting stronger everyday! Keep singing "Food, glorious food" little buddy! (Did we already use the "Just eat it" song?) Well anyways just do it little buddy and gain that weight. It's a Perry tradition: eat, watch basketball, sleep, eat, watch basketball sleep! Why break tradition when it has done so well for all of our figures! We can't wait to see you for the graduation on Mother's Day! Blessings and prayers to all!

Posted by robin on March 25, 2008 at 12:04 AM EDT #

We too had issues trying to keep P awake long enough to eat. When bottle feeding, we would try to hold him away from us (put a pillow in our lap and put P on the pillow) so he would not feel our body heat and fall back asleep. We would also rub circles with our thumb in the palm of his hand and mess with his ears. Hang in there! It gets so much better!!!

Posted by Bethany Watkins on March 25, 2008 at 09:03 AM EDT #

Go, Baby Jay. We are praying for you. TT knew that you would be on your best behavior. When I come over, make sure that you act all sweet then too, okay? No cutting up on TT. Maybe he'll push me back for all the times I pushed him :)

Posted by Theresa on March 25, 2008 at 10:01 AM EDT #

to all of you so close by, we are keeping up on all that you share and have all of you in our thoughts and prayers. This little boy, sent from God, will be a fighter and will learn to eat -----it is very much harder for all of you as he tries to let you know what he needs. Please feel free to call on us at 3115 hines as we are not far away. I am here all days that you see my van and Helen and Malcolm are here nights. Reach out as needed. All of us love all of you Charlotte

Posted by charlotte Heath on March 25, 2008 at 10:59 AM EDT #

Sunday, March 23, 2008

Country Road, take me home...

Sunday Mar 23, 2008

Country road, take me home...

...Back to the place where I belong.

So maybe I-40 isn?t a country road, but it did take us back home from Duke again. This stay was much shorter-we left mid-afternoon on Saturday, after they were sure that Jay was eating well. That meant Jay and Derek got to spend the evening watching the NCAA tournament on the couch instead of a hospital bed.

The EKG on Saturday looked better than on Friday, so the docs at Duke were very confident that any troubles he was having were unrelated to his heart. They actually said that his heart couldn?t look any better to be a week after surgery. So we?re not sure what the problem was earlier in the week, but it seems to be better now. Let?s just hope it stays that way.

He is continuing to eat well at home, and we?ll head back to the pediatrician on Monday to see how he is doing. Maybe he?ll have broken the 10 pound barrier again.

We are now off to take our first outing to somewhere other than a doctor?we?re heading to Great Aunt Jeannette?s house for Easter Dinner. Say a prayer for us and our fellow diners!


I hope that you all enjoyed Easter with your family. I am glad that you are back at home and can't wait to see you all!

Posted by Lisa Jones on March 24, 2008 at 07:54 AM EDT #

Saturday, March 22, 2008

Second verse, same as the first...

Saturday Mar 22, 2008

Second verse, same as the first...

A little bit louder and a little bit worse. (That's from Henry VIII by Herman's Hermits for those of you who enjoy having oldies stuck in your head.)

So, we just keep adding to the number of doctors that Jay has seen in his short little life. We had a follow up appointment Friday morning at 9:30 a.m. with the surgeon at Duke. We fully expected that they would check his incision, remove the stitches where his drainage tube was, say he looks good & send us on our way. We thought we'd be back home by lunchtime. Not so much. Let's just say I'm writing this post from the hospital and we're expecting the Easter Bunny to visit us here on Sunday.

The night before his appointment (Thursday night) was horrendous for all of us. Jay had a screaming fit that lasted from about 6 p.m. until about 1 a.m. It was clear that he was hungry, but when he went to eat, he would get so exhausted that he could eat less than an ounce. (He had been eating 3-4 oz. per feeding in the prior days.) Then he'd fall asleep, and sleep for about 15 minutes. Then he'd wake up screaming and hungry and start the process over again. He never really would eat a full meal and he struggled to breathe even when he wasn't eating. Let me say that there is nothing scarier in the world than watching your child struggle to breathe, and seeing that every breath takes all the energy that he has.

So we discussed the problem with the nurse practioner today, and she was concerned that the tiring out was due to changes in his heart rather than the vocal cord paralysis. Apparently, his EKG looks different, and in some ways worse, than it did BEFORE surgery. That's not to say that the surgery didn't work, but that his heart may have had some additional damage during surgery or since then. Just to be sure that his aorta was still looking open & flowing freely, they did another echocardiogram. Unfortunately, he was moving around and they wanted more detail than they could get with him wriggling. So they wanted yet another echo, this time under sedation. But they really wanted to be certain that under sedation, he wasn't going to have any additional breathing problems. So, it's back to the PICU again.

He did great on echo #2 (this is probably his 7th in 2 weeks!) and woke up with no breathing issues and hungry. So the nurse fed him 3 oz and they sent him out of ICU & back up to a private room. Luckily, this time they kept him in ICU long enough for us to go home and get a change of clothes (and of course the laptop - our only lifeline to the outside world!).

He did great last night - eating like a champ and very minimal breathing issues. I know the doctors think we're crazy, but the struggles he had to breathe on Thursday night were really awful. And while I didn't ever want a return trip through this place, I'm glad they're checking out everything to make sure that he's okay. I just hope he starts gaining weight soon - He dropped from his birth weight of 10 lbs 4 oz to 9 lbs 13 and can't quite seem to make it back up over the 10 mark. Please think hungry thoughts for us!


Hope all is going well. You are still in our prayers. Have a great first Easter with Jay.

Tony & Toni

Posted by Tony & Toni on March 22, 2008 at 08:10 AM EDT #

The Easter Bunny knows where all the children are little Jay! I feel safe knowing you are there and getting that USDA stamp of approval before you get home. I guess vacuum cleaners left on, Alumintum formula, white noise from TV's and radios are not the solution here guys. This is no colic! :-) Sweet dreams for you all, blessings on everyone and prayers of a somewhat normal life prevails soon! Little Jay you bring us sunshine when we see your sweet face. Keep those pictures coming!

Posted by Robin Perry on March 22, 2008 at 11:06 AM EDT #

Thanks for the update. I am glad to hear that he was feeding (feeling?) better today. The whole Black family is pulling for little Jay and his mommy and daddy. We love you!

Posted by Aunt Beth on March 22, 2008 at 12:04 PM EDT #

Uh-Duh... I just saw this comment thing. I bet you never knew I was keeping up with Jay. I am glad he is doing better today and my prayers are for him to continue that way. If anything I am confident of, is that this child is the most prayed for and he is in the Lord hands. He gave Jay to the most able parents to handle his first few weeks in the world.
I hope your Easter is full of blessings and can rejoice not only in Gods gift in redemption but of His love for you giving you strength, faith and understanding with all you have been through.
Love you!!
Aunt Ali

Posted by Great Ali on March 23, 2008 at 03:30 PM EDT #

Know that I am still praying for you and with you reagrding Jay's health.

Posted by Theresa on March 24, 2008 at 10:04 AM EDT #

Thursday, March 20, 2008

When you breathe...

Thursday Mar 20, 2008

When you breathe...

...I wanna be the air for you
I'll be there for you

So you'll all be proud to know that we made it up and out of the house this morning in record time - only 2 and a half hours. (Of course beating yesterday's record of 4 hours wasn't THAT hard to top, but who's counting?)

Today's trip to the pediatric ENT was a little disappointing. One of the risks of any surgery near the aorta is damage to the laryngeal nerve, including paralysis of the vocal cord(s). Apparently the laryngeal nerve goes from the brain, down around the aorta, and back up to the vocal cords. In moving it out of the way to repair the aorta, it's easy to get damaged. At the ENT, the doctor ran an endoscope up Jay's nose & down his throat to get a good look at his vocal cords. Jay was none to happy about this particular bit of fun (and who would be?!), but it is actually important for him to cry during the procedure so that the doc can see his vocal folds in action. Apparantly, one of Jay's is completely paralyzed, which explains his difficulty breathing, particularly when trying to coordinate breathing with swallowing.

There's really nothing they can do at this point - some kids resolve on their own, others don't. Those that don't can usually still talk, but typically have very soft, breathy voices. Sometimes the problem can be improved with speech/voice therapy. Surgery is another option, but not one they would consider until he's much older. One positive sign is that the doctor was impressed with Jay's loud cry. (Yeah, our neighbors are impressed at 3 a.m. as well.) That's a sign that he may still have a fairly normal voice when he does begin to talk.

And while I'm glad to have an explanation for his swallowing & breathing struggles, it doesn't really make feeding, especially nursing, any easier at this point. So far he's been unable to breastfeed and has been eating only pumped milk from a bottle. And while there are certainly advantages to bottle feeding, namely that I'm not the only one who can feed him, I was really looking forward to breastfeeding as a bonding experience.

I guess for me the hardest thing is that this is just one more issue that we have to deal with. All of the cardiologists/surgeons indicated that once the aorta was repaired, he'd pretty much be a normal kid - and I wholeheartedly believed that. In fact, his positive prognosis is really what has kept me going throughout the past 2 weeks. (Has it really been 2 weeks since he was born?!) But this is just another layer of medical issues that could very well follow him for life. And while I'm not really too disappointed that his career as a professional opera singer is probably over, I worry about him struggling to talk. The playground is a tough enough place for a "normal" kid, much less one who talks funny.


Jen, We can't wait to come meet Jay! We've been reading your postings, and very much enjoying them! Thank you for keeping them up to date, we feel like we are there. And in the words of my favorite artist
" Its hard with the world in your face, Trying to hold on..
Faith: you know you?re gonna live through the rain
Lord: you got to keep the faith!"
We just want you to know we are all here for you, and that everything will work out, keep the faith! Love Danica & Brian

Posted by Danica and Brian Andrews on March 21, 2008 at 01:44 PM EDT #

I love your postings Jen! I know that it will all turn out just fine ... keep the faith with you always! Looking forward to meeting sweet baby Jay. Happy Easter!

Posted by Marion on March 21, 2008 at 03:51 PM EDT #

Hey there...
Glad to hear that things are trucking along, but sorry to hear about that darned vocal fold. I know two OUTSTANDING voice therapists in Greeville though. So, if therapy is ever needed, I can help you out!


Posted by Katrine on March 23, 2008 at 08:38 PM EDT #

Wednesday, March 19, 2008

Doctor, Doctor! Gimme the news...

Wednesday Mar 19, 2008

Doctor, doctor! Gimme the news...

...I've got a bad case of Baby Blues!

Since he was caught by the obstetrician at 2:30am on March 7th. Jay has seen a total of 17 different doctors and 3 med students. There will be 3 more added to that total before the weekend is over. Just our little contribution to keeping the health care system running and educating the future of the medical profession (several of the doctors we saw at Duke were interns, residents, and fellows).

Today was his first trip to the pediatrician. Yeah--a regular newborn checkup!. This was our first attempt to get somewhere on time with Jay in tow. The appointment was at 10am, so we got up at 6am to get started. Seriously, we got up 4 hours before his appointment. Now you'd think the pediatrician was in Greensboro, but no he is very close to where we work. So that means to get to work by 8am and get him to daycare first, we'll have to start about 3am!

Unfortunately, his regular newborn checkup was not just a regular newborn checkup. He has had some raspy breathing--sort of Darth Vader-ish--for a while now. The folks at Duke said it was normal newborn sounds--they have small noses, don't cough very well, and can't blow their nose--but now he has gotten worse. Our pediatrician agreed that it does sound like normal newborn grunts and groans (who knew that newborns snore like 50 year old men with deviated septums?) but he shouldn't do it all the time. So guess what, we got to see doctor number 17 today--a radiologist for chest xrays and a look at his trachea. Well, apparently the time he spent on the ventilator at Duke may have led to some irritation of his trachea and now it is swollen. This apparently is what croup looks like on x-rays, and while he doesn't have croup, he does sound very similar when breathing. There is also a chance his vocal cords are irritated, so that warrants a trip to see doctor number 18 tomorrow--a pediatric ENT. Please keep sending those positive thoughts and prayers our way. Maybe we'll only have to see his pediatrician and cardiologist before too much longer.

Due to popular demand by our far away friends and family, here are a couple more pictures.


What a cutie! Thanks for sharing the pictures.

Posted by Mindy Nichols on March 19, 2008 at 05:28 PM EDT #

Best of luck at the ENT tomorrow. At least he won't have to see the veterinarian, then you know you would be in trouble! :) I hope that you have good news, and I will continue to pray for all of you.

Posted by Erin on March 19, 2008 at 07:18 PM EDT #

He's precious...and holding on to mommy's thumb so sweetly. I think he might be getting ready to take that hat off in the second picture! :) Good luck with all the MD appointments. We are continuing to pray for you guys.

Posted by Rebecca on March 19, 2008 at 08:50 PM EDT #

He's so cute!!

Posted by Stacy and Chris A. on March 20, 2008 at 09:21 AM EDT #

I am so happy for you guys. i know it has been a hard road so far but you are very strong people with a great group behind you. we send our love and best wishes. give Jay a kiss and hug from us. teri

Posted by teri and howie critcher on March 20, 2008 at 02:37 PM EDT #

Oh my goodness!!! That's no baby...that's a little man. He is too cute for words!!!! I can't wait to get my first hug.

Posted by Theresa on March 21, 2008 at 08:48 AM EDT #

Tuesday, March 18, 2008

If we couldn't laugh...

Tuesday Mar 18, 2008

If we couldn't laugh...

...we would all go insane.

Sorry for the very long wait between posts. We're all doing well at home and trying to figure out this new parenting gig we've taken on. Taking Jay home has been amazing- as we were feeding him last night, I had this feeling of "normalcy" and realized that this is what any new parents are going through. I had to say a prayer of thanks to hear him crying his little lungs out at 3 a.m. (Now THAT'S something I never expected to say - that I actually WANT to hear middle of the night wailing!)

We thought that we'd share some of the rather humorous moments we've had in the past week that helped keep us laughing through the difficult times. Such as...

Jay's first diaper change involved a reinactment of Old Faithful with a urine stream that arced over his head and soaked his little hat. Yes, we had been warned that he would spray us if we weren't careful with diaper changes. No, we did not expect him to pee on his own head.

The time Jay farted so loudly that the nurse walking down the hall stopped in her tracks and stuck her head in the room to comment on it. I know that 12 year old boys think farts are hilarious, but a 6 day old? I swear, he's doing them to amuse himself.

Derek not once, but twice called Jen's cell phone while it was in his own pocket. Both times, he handed the phone to Jen and said "Your phone is ringing - can you get that?" The really sad thing is neither time was he really trying to call Jen--he dialed the wrong number both times.

Before leaving the hospital, we decided to get one last diaper out of them, so we changed Jay before putting him in his going home outfit. We definitely peaked a little early on that one--he started to pee (but we had learned that lesson and were ready), but then he dropped one of the bigger dumps of his short little life and the whole bed was flooded. I'm sorry to whoever has to do that laundry.

And the biggest sign yet that we are seriously sleep deprived... At night we have tried to establish an efficient routine to get Jay fed, changed, and more milk pumped. I usually fix the bottle of the warmed milk, while Derek gets Jay awake and ready to eat. Last night, I poured the warmed milk carefully into Jay's bottle, accurately noting the number of cc's to help make sure that he's getting exactly the right amount to eat. I hand the bottle to Derek who tips it up to feed Jay -- only to realize that I had neglected to put a nipple on the bottle. Neither of us realized what happened until half the bottle was poured all over Jay, Derek and the bed. Poor kid had to be thinking "Manna falling from heaven! This is way easier than actually having to suck on a bottle!" Yeah, he's moving along quickly, but we probably should consider transitioning from bottle to sippy cup before expecting the kid to drink milk that's being poured on him like a fountain...

Note to self - keep laughing.


I can't wait to see him this weekend and laugh with you! See you soon...

Posted by Jamie on March 18, 2008 at 05:24 PM EDT #

Yayyy!!! Here's Jay:

"We're home and these people are pouring milk on me; this must be some new feeding method. Works for me mommy. Hey Dad, don't you think this is cool?!!!

I'll call to get the "all clear" signal before I try to come over.

Posted by Theresa on March 19, 2008 at 10:34 AM EDT #

Hi Jen and Derek,
I have been keeping up with Jay's progress through Teri and she put me onto your blog. That has been great, to get the news without imposing on you at a stressful time. I have been thinking of and praying for all of you throughout this ordeal. After finding out he had been moved to a room, I didn't get back to read the latest until today. Your messages have been informative as well as entertaining. I love the song title theme. What's with the Torquil thing? I know it must be an inside joke.
I hope your dad is well now so that he can see his first grandchild. That must have been so hard on him.
My best wishes to your little family and let's hope there's smooth sailing for Jay from here on out.

Love to all,

Posted by Nancy Kiltie on March 19, 2008 at 03:22 PM EDT #

My best birthday present this year was the news that Jay was out of surgery and going well! It was so great to get home and finally get to hold the little bugger!! What a difference from the first time I saw him when he was 45 minutes old - thank you for letting me be a part of his life from the beginning!! Love ya, AJ

Posted by Great AJ on March 19, 2008 at 03:38 PM EDT #

Saturday, March 15, 2008

Homeward Bound...

Saturday Mar 15, 2008

Homeward bound...

Home where my thought?s escaping, home where my music?s playing, home where my love lies waiting silently for me.

So they are kicking us out or we are making a break for it while no one is looking, but either way we are outta here. They have unhooked him from all monitoring (how do I know he is alive without an EKG and pulse ox?), he is eating like a champ (like any good Foster), pooping up a storm (like any good McLean?don?t tell Jen I said that), and his incision looks good. Without all the monitors, it is surprisingly quiet in here?you can still hear the alarms in the other rooms, the other babies crying, and the Life Flight helicopter coming and going?which I believe lands right on top of our room?so there is no mistaking we are still in the hospital. But they are sending us home in the next few hours.

He will have one follow-up visit here at Duke with the surgeons this week, a visit to his pediatrician on Wednesday, and a checkup with his cardiologist in a month. It?s kinda crazy that he is a week old and already has a cardiologist! Otherwise, he is free to be a normal newborn.

Thanks to all the doctors and nurses here at Duke who have made this experience as painless as possible for both us and him. They have done an incredible job taking care of him, and helping us get through this as well. I hope none of you have to experience this, but if you do, I highly recommend the pediatric cardiology, surgery, and PICU teams here. I?m not a Duke fan yet, but if they win the ACC tournament, I?d be okay with that this year.

By the way, how is State doing in the tourney? We?ve been a little out of the loop lately.


Um... don't ask about State. There's always baseball season to look forward to...

Home? You're going home? How wonderful!! We'll keep praying for you because anyone who has a newborn at home NEEDS prayer. But it has to be a whole lot better than having a newborn in the hospital!

Love and prayers,

Posted by Amy Galvan on March 15, 2008 at 01:02 PM EDT #

Woohoo!! I am so happy that you all can go home today. Jay has really been a strong boy! I am sure Jay will love his room and learn about all the comforts of home.

Posted by Lisa Jones on March 15, 2008 at 01:50 PM EDT #

Wonderful!!! That is so exciting and such good news. I wish you the best as you take your new baby home. I know Jay will have fun checking out the place! We look forward to seeing him (and his parents of course!).

Posted by Rebecca on March 15, 2008 at 03:12 PM EDT #

Hey Jen,

Brooke and I have been keeping up with you guys through your blog and have been saying lots of prayers for everyone. It is wonderful news that you are able to go home. Please keep us posted and send some pictures. We need to send you some more of Maggie, too. Keep in touch.

God Bless,
David and Brooke Bowman

Posted by David and Brooke Bowman on March 17, 2008 at 09:12 AM EDT #

Awesome! I'm so glad Jay is doing well so you can go home. We'll keep ya'll in our prayers as I know bringing him home is scary. Please call if you need anything!!!

Posted by Bethany on March 17, 2008 at 12:35 PM EDT #

Friday, March 14, 2008

I've got friends...

Friday Mar 14, 2008

I've got friends...

...In low places.

Okay, so the "low places" I'm referring to are probably a little different than the low places that Garth had in mind. But while this entire experience could be considered a very low point in our lives, there have been so many wonderful friends that have helped get us through this ordeal. I can't even begin to tell you how many people have prayed for us, called/emailed us to be sure we're not losing our sanity, brought us lunch, etc. Y'all have been amazing, and I simply can't thank you enough.

But I guess the surprising thing is the friends we have found here at Duke. We've gotten to know the parents of Jay's first roommate (a cute girl - woohoo, Go Jay!) just by the amount of time we all spent in the waiting room. Without sharing details of her medical issues, I can only ask that you keep her in your thoughts & prayers as they have done for us.

On Tuesday night after surgery, there was a patient advocate who hosted a scrapbooking event in the conference room. As a scrapbooker, it was just what the doctor ordered ? for me! We moms sat around sharing pictures and stories of our babies, talking about our frustrations, our successes. We understand how significant it is to say ?My baby got off his oxygen today? while other parents we know might not realize what an accomplishment that is. (Note to my scrappin? girls ? y?all are not being replaced anytime soon!)

A friend from Colorado went through a similar experience with her newborn son, and we have emailed after not having chatted in quite some time. Her advice was so reassuring as someone who has been in this rough place and come through stronger for it.

Jay has certainly made friends with the many nurses & doctors that he's had here as well. His favorite nurse, Bill, took care of him every night that he was in the PICU. Bill is one of those laid-back people who never lets the chaos of an intensive care environment rattle him - a VERY good quality to have when you're working with the sickest babies. But there have been many other nurses and doctors who have helped us through those rough patches and meltdown moments we?ve faced as parents of a sick kid.

A brilliant friend from high school and college, Kyle, turned out to be Jay?s doctor in the PICU when he arrived on Saturday and he was on duty again the day of surgery. It was so comforting to see a familiar face and to know without a doubt that Jay was in the best hands possible.

So, to all friends old and new who have helped us during these challenging days ? Thank you.


Oh, does this mean that Duke would welcome your scrapbook pals and all of our scrapping/stamping/crafting stuff? We'll be right over ... as soon as we figure out how to get it from the car into the hospital!

In case I don't make it past security, give little Jay a hug for me!


Posted by Amy Galvan on March 14, 2008 at 03:22 PM EDT #

Hey guys! I am so glad to hear how well Jay is doing. Me and other people from my church have been praying for him this week. We continue to pray that he eats well and gets strong enough to go home soon. I am sure y'all are looking forward to that moment.


Posted by Tina Morgan on March 14, 2008 at 07:41 PM EDT #

Thursday, March 13, 2008

Eat it...

Thursday Mar 13, 2008

Eat it..

Just eat it! (First, our apologies for using not one but TWO Weird Al Yankovich songs in recent posts - We promise that we'll never use "Amish Paradise" in any future entries. But really, can you think of a song besides "Eat it" that relates to eating, baby food, or milk?)

So our big hurdle now is getting Jay to eat well before we can leave the hospital. After all he's been through, there are several challenges to getting him to eat. The first, and probably biggest, is that he attempted to eat twice during his first day with us at Rex, but ever since, he's been fed through an IV. His tummy isn't used to food, and it's taking some time to learn how to suck and swallow. He's had a breathing tube put in not once but twice, and that is probably hurting his throat. They warned us that many babies have issues with reflux after heart surgery, so that's something we'll have to watch for.

Jay did really well today with his feeding, showing off his nursing skills for the lactation consultant. Then, while she was off writing a glowing report to give to his doctors, he puked up everything that he had just eaten. The vomiting got him a little choked up and he started breathing really fast and wheezing from some goo stuck in his throat. Scared me to death. They have given us some good advice to keep it from happening again, including burping more often, stopping him from eating periodically so he won't eat too fast, sitting him upright after a feeding and making sure the nurses do all their poking, prodding, bloodletting, etc. BEFORE he eats so he won't get agitated after a meal.

I have no idea what I would have done if I had been at home alone with him during this puking/choking incident - probably would have called 911. Those of you with kids are thinking, "Big deal, your baby spit up." But as scary as it is to take home a newborn, it's a million times scarier to take home one who has been monitored by pros and machines around the clock for his entire life.

Just now, for example, his heart rate dropped from around 130 where it's been all day to 80. Alarms went off and nurses came running. It's creeped back up to about 110, but how in the world would I know that if it happened at home? He was sleeping peacefully, and didn't move a muscle through the entire episode. He never even woke up when we all rushed to the bassinet. It's terrifying to watch, and now we're expected to just say "Whew, glad that's over!"

I may never sleep at night again.


Jen and Derek,
For those of us who have been through a first baby (and survived) there is a little humor and a lot of nostalgia in your blog. Even though Scott was a healthy baby, I spent the first year of his life pretty sure that he wasn't going to make it through the day. He would hiccup and I was sure that it was the end. He would cry and I was sure it was the final signal. He would burp and...well you get the picture. The conclusion I arrived at (after wasting many sleepless nights) is that babies are remarkable durable. Getting used to what they do and what it means is just part of being a parent (and probably the easy part). My experience is only a drop compared with the flood you have been through, but I can see the flavor of your worries.

You have the thoughts and prayers of your Florida contingent of Aunts and Uncles. I look forward to the day when Uncle Mike can take Torquil fishing.

Lots of love and prayers,


Posted by Mike on March 14, 2008 at 10:32 AM EDT #

Ain't goin' down til' the sun comes up!

Thursday Mar 13, 2008

Ain't goin' down til' the sun comes up!

Hi everyone! My name is Jay, and mom and dad decided to give me a chance to write. So, I thought I'd describe my morning for you so you can have an idea of what a zoo it is around here.

6:00 - Mom & Dad wake me up for breakfast. I personally thought it was too early to nurse, but they gave me a bottle and that was yummy.

6:15 - Nurse came in to take my blood pressure - AGAIN. I wouldn't whine so much if that cuff wasn't so stinkin' tight.

6:45 - Guy comes in to get a chest x-ray to see if they can take out this drainage tube. I'm sick of this thing!

7:02 - Med student came in again to listen to my heart. Yup, still ticking away.

7:05 - Dropped the biggest, greenest poop of my life. Keep in mind, my life has only been 7 days, but still, I was proud of myself.

7:12 - Surgery fellow came by. He's waiting for the x-ray to be done, but wants to take out that chest tube.

7:19 - X-ray must have shown no more fluid. (I'd have told him if he would just ask me!) Out with the tube, but yowza did that hurt!

7:25 - Nurse came in with some grape-flavored Tylenol. Yum - dessert!

7:34 - Blood guy came by to stick me in the heel - AGAIN. Good thing I don't have to walk anytime soon.

7:39 - Resident and Intern came by to check on me.

7:42 - Yet another chest x-ray to see if fluid accumulated since they took out the drainage tube.

8:20 - I'm giving mom the hungry signs, so she gave me more milk. That stuff is GOOOOOD! Wish they would have let me eat a little earlier in my life.

8:29 - Off to the echocardiogram room. They even let Dad tag along. The best part - I got to ride the elevator!

So - what did YOU do this morning?


What a morning you had! I keep asking mom when I can see and talk to you. Mom has been kind of sick the last couple of days. She is thinking that it is just allergies, but doesn't want to bring anything "yucky" to you. My morning doesn't compare, I was stuck in my carseat while mom ran a few errands. I did get a balloon at the grocery store, though. Off to take a nap, now! Hang in there.

Posted by Tyler Jones on March 13, 2008 at 02:04 PM EDT #

Jay, we're so glad to hear that you've already learned to type...and what a great sense of humor. We can't wait to see what gems you come up with when you aren't just 2 days out from heart surgery. Sounds like you are being treated like a little rock star, with all that fanfare!!!!!
Keep of the good work, everyone!!!!!!

Posted by The Bellizzis on March 13, 2008 at 03:14 PM EDT #

We knew with parents like yours, you were sure to be a whiz kid. You have already surpassed our expectations. Keep up the good work and sense of humor. Just wait until you meet all of Daddies furry friends. They are lots more fun than anyone in a white coat. We're still praying for you to come home and get the all clear.

Posted by Ginger Graves on March 13, 2008 at 04:01 PM EDT #

Jay, I am so glad that you are in charge! Now that you are doing so much better, please keep up the updates. I look forward to your blogs more than I do TMZ and Perez Hilton! Give extra baby slobbery kisses to your mom and dad-they have been very worried about you. Take care of them and get out of that hospital as fast as you can.

Posted by crystal mullins on March 13, 2008 at 04:53 PM EDT #

Wednesday, March 12, 2008

Movin' on up...

Wednesday Mar 12, 2008

Movin' on up... the east side! To a deluxe apartment in the sky!

So little Jay is doing great. He came off the ventilator last night at 11pm and was very stable all night. So stable, in fact, that they moved him to "backyard" of PICU where the healthier babies are. We were a little surprised to come in this morning and not find him in his bed. (Umm, he's not crawling yet, so where did he go?)

But after a brief stint in the "backyard", he has now moved out of the PICU to the cardiac wing of the pediatric unit. Yippee! That means private room with mom & dad. For mom and dad, that means we now have to pay attention to all the beeps, bells, dings, and alarms that keep going off constantly. We're kinda figuring out which ones are worry-worthy, and which ones just mean that he wiggled and the monitor got mad about it.

So, for those of you who are medically inclined, simply curious, or want to attempt do-it-yourself coarc repair, here's a website with good illustrations of what an aortic coarctation is and how they fix it.


WOW!!!! What a difference a day makes. We're so glad to hear that little Jay has let Mom and Dad move in. Keep up the good work, everyone!

Posted by The Bellizzis on March 12, 2008 at 04:29 PM EDT #

Wow, so glad to hear he's doing great! He'll be home keeping you guys up at night before you know it. :)
We're thinking of you and can't wait to see Jay!

Posted by Stacy and Chris A. on March 12, 2008 at 05:08 PM EDT #

Hey guys- thanks for the updates. I've had all of Hampton praying for you!! Can't wait to meet him and see you.

Posted by Jill Green on March 12, 2008 at 08:00 PM EDT #

I am so thankful to hear that baby Jay is doing so well! I have been praying for you all. Our SS class has been praying for you as well.

I have also enjoyed the blog and the picutres of baby Jay...what a cutie! Your writing is very witty just like your mom's!

I will continue to pray for all of you in the coming days.

Posted by Lynette Rhodes on March 12, 2008 at 10:41 PM EDT #

Jen and Derek- I am so proud that you have remained so strong during all of this for your baby boy. Derek, it must be even harder for you to know what it all means medically, and yet you are doing great! Jay is in my prayers, and Leonard and I are thinking of your family and wishing you the best. Keep him strong! :)

Posted by Erin Mitchell on March 13, 2008 at 07:22 AM EDT #

Fantastic news indeed! Thanks for keeping us posted ... know that we are thinking of you. And wishing you all the best!

Posted by Marion Zanga on March 13, 2008 at 07:37 AM EDT #

So glad things are looking up! We will keep you in our prayers.

Posted by Stephanie & Amanda on March 13, 2008 at 07:46 AM EDT #

Good morning baby Jay,
Oh, so special. Breathing so well. In your own room with mom and dad. I bet you just love the touch of both of them. Keep on truckin'. Soon, you will be home in your own special world.

Jen, I know that you and Derek are just thrilled with the progress. Yes, all the bells and whistles wil be going off and now you can hear them!!! I know that your sense of humor is wonderful and the music choices are challenging,
but so glad to hear you both are doing well.
I still stand in your office doorway but now I have a smile. You take care and have a great day.

Posted by Teresa D. Carpenter on March 13, 2008 at 08:16 AM EDT #

Amen to that! So glad you can all be together around-the-clock now. Such good news!! Austin got this report in at church last night and the whole room was excited! You all are being prayed for by MANY people! Take care and thanks for posting the great news!


Posted by Rebecca on March 13, 2008 at 11:25 AM EDT #

Jen and Derek, thanks for the updates. Laura showed me the pics, and he is a SOLID boy!!!! Katherine and I are so glad all went well with surgery. You all will continue to remain in our thoughts and prayers!


Posted by Vern on March 13, 2008 at 11:33 AM EDT #

Tuesday, March 11, 2008

Celebrate good times...

Tuesday Mar 11, 2008

Celebrate good times...

...come on! We apologize for getting bad 70s disco music stuck in your head.

Jay is now out of surgery, and it went very well. They finished about 5:15pm, but had said that they would be finished around 4pm, so the last hour was definitely stressful. There was nothing wrong that caused the delay--it's just that folks around here are not great estimating how long anything takes. There are a few fingernail marks in the arms of the chairs we were sitting in, but we pryed our fingers out of wood and finally took a breath. We did get to see him very briefly, and he is already starting to wake up from surgery. Once he is stable we will be able to see him for a longer period of time.

The next hurdle is breathing on his on after coming off the ventilator, and we hope that will happen tonight or tomorrow morning. If his blood pressure remains stable and he does well off the ventilator, he will likely come out of the PICU in a day or two.



Great News Guys! We've been thinking about you all day. We're glad to hear that he is on his way to recovery. We will continue to remember you and him and look forward to the day he can meet his fellow pack memebers. You are in our prayers. God Bless all of you.

Posted by Ginger Graves on March 11, 2008 at 06:59 PM EDT #

Big and tough! This kid is gonna be unstoppable! We can't wait to see him again.

Love and prayers are coming your way.

Malcolm, Helen and Maggie

Posted by Helen Green on March 11, 2008 at 07:22 PM EDT #

I'm so glad to hear things went well! I've been thinking about you and saying prayers for you all for days. Can't wait to meet the little guy when he comes home!

Posted by Jennifer Papp on March 11, 2008 at 08:53 PM EDT #

That is great news!!!! I am so glad everything went well today.

Posted by Cara Mac on March 11, 2008 at 09:29 PM EDT #

It is very good to hear that the surgery went well. That is indeed great news. I hope that Jay continues to improve in the coming days. You guys are in my thoughts and prayers

Posted by Oz Wilder on March 11, 2008 at 10:19 PM EDT #

Praise the Lord! That's great news - now you can stop torturing the chairs in the waiting room. :)

Posted by Mindy Nichols on March 11, 2008 at 10:58 PM EDT #

YAY! I have always hated Duke basketball but after this, I might have to rethink my alliances. Love to you all...

Posted by Jamie J on March 11, 2008 at 11:29 PM EDT #

Good morning, Jay! Glad to hear you are doing so well. Now, remember to smile at mom and dad! Be
kind to the nurses!!! You are going to be fine!
Your angels are doing double and triple duty.

Jen, I just think about you all during the day. That last hour of waiting had to be the worst. Just give Jay a squeeze for me and know that you are in my daily thoughts.

I love the music theme. That has to be a great item for Derek. A vet with a music sense. His future paitents will love it!!!!

I wonder what the next set of musical tones will be from!!!!!

Catch a nap, have a great day.


Posted by Teresa D. Carpenter on March 12, 2008 at 08:27 AM EDT #


I am truly happy that your bundle is on his way to recovery. He has been in my prayers.


Posted by Teresa on March 12, 2008 at 10:05 AM EDT #

Yay for Jay! I'm so glad he's doing well. I've been thinking about all of you so often. This is a tough little guy--he's going to do great in life!

Posted by Dawn Ohlsson on March 12, 2008 at 10:30 AM EDT #

Jen and Derek,

I so happy to hear that Jay is on his way to recovery! I have been thinking about you guys and we are praying for Jay and the whole family. We can't wait to meet this tough little guy!


Posted by Heather Godwin on March 12, 2008 at 10:39 AM EDT #

Jen, Derek and Jay, you all are surrounded by so many prayers and postive thoughts, God can't help but notice! Justgather strength from your love for each other and hold even tighter to the little miracle that you now have. And keep up the sense of humor! Even in impossible circumstances, a smile or a laugh can give you that little push that you need to make it through!
You are in our thoughts and prayers,
Alan and Crystal

Posted by crystal mullins on March 12, 2008 at 10:44 AM EDT #

Jen, Derek and Jay,

Fantastic. Praying for his continued speedy and complete recovery.

Best - Jody

Posted by Jody Gookin on March 12, 2008 at 11:15 AM EDT #

I'm so happy to hear that the surgery went well. We've been thinking of you and will continue to pray that he recovers quickly and can go home.

Posted by Jennifer G. on March 12, 2008 at 11:45 AM EDT #