McVeigh Family Reunion

Toby arrived home yesterday evening after a long day in the car. He took a little sniff tour of the house and seemed happy to see us but he tried to play it cool so we wouldn't realize how much he missed us.

First Scott got a cuddle...

...then it was my turn...

...then Toby greeted his neighborhood buddy Sasha in the only way he knows how- with a friendly sniff of the bum.

FINALLY, the entire McVeigh family is home and accounted for :)

Toby was mildly curious about Ruby and gave her a sniff too, but mostly he was just happy to be with Mom and Dad. As you can see above, he has found his spot in Ruby's room already and is enjoying storytime with Dad.

Someone else is enjoying storytime too ;)

We are slowly adjusting to being back at home (and east coast time). We've had a few doctors' visits and the consensus is that Ruby looks great and is doing very well. We're going to keep a close eye on her weight and make sure she's porking up (!) but other than that, she's just gotta do what normal babies do! Ruby is 4 weeks old today and Scott and I are absolutely amazed at how far she has come in that time. I had a chance to look through some of the pics from the first few days and I still can't believe it.

This was our baby 4 weeks ago...

...and here she is now.

It's hard to look at those very first pictures!
For all of the positive thoughts, energy, prayers, 11:11 wishes, eyelash wishes, crossed fingers and toes - THANK YOU!!

It worked.

xox
Adie

Operation T.O.B.Y.

When we arrived home Thursday night and walked into the house it was wonderful to be home but it was clear something was missing- Our first (4-legged) child!!!
Our pup has been at "Camp Cole" in Raleigh, NC for the past 7 weeks while we were in California. His foster parents Wes and Carrie have been taking great care of him (THANK YOU!) but, now that we're back, it's time to reunite the McVeigh family and introduce Toby to his lil' sis!

A number of people are playing a role in the McVeigh reunification program tomorrow with 3 different legs on his journey home. It's almost as if Toby is the olympic torch being passed from person to person to get to his final destination. Thank you in advance to Carrie's Mom and brother and Kristin for helping Toby get home!

It will be interesting to see what Toby thinks of the new addtion to our family. He has a bad habit of sniffing bums as a way of greeting people and I am sure Ruby will provide lots of new smells to sniff ;) I can't wait to cuddle our lil' pup!!! We'll post some family pics of the reunion soon :)

Goodnight,
Adie

Home Sweet Home

We've been home about 48 hours now and it's just starting to sink in.

Our trip home was, thankfully, uneventful. Ruby was a model passenger on the flight- cool, calm, and collected. Her parents, however, were balls of anxiety. We fretted over whether the oxygen concentrator would malfunction mid flight. I pictured myself doing CPR and screaming at the flight attendants to divert the plane to the nearest hospital and land immediately. Luckily, my ability to transform into a raving lunatic was not called into action. Each hour we were in the air felt like eternity but they passed one by one. After 5 hours of pure adrenaline, we touched down in Atlanta and welcomed Ruby home. Yes, you guessed it- those happy tears appeared again.

As we recover from jet lag and get accustomed to being home with our cute new family member, Scott and I are just beginning to process the stress of what we have experienced in the past few months. It feels like we have been holding our breath since January 4th (when we found out something was wrong during a routine ultrasound). We are ready to dial down our worry to the "average parent level" but I think it's going to take a while!

Not having immediate family in Atlanta, our friends near and far have become family and this has never been more evident than upon Ruby's homecoming. Not only did our friends greet us at the airport and take us home, they had cleaned the house, stocked our fridge, decorated, bought Ruby a birthday cake, flowers, and gifts, and organized everyone to drop off meals in the coming weeks. We can't really say it enough- THANK YOU!!! We feel very loved :)

We'll keep you posted on the adventures of Ruby McVeigh as she adjusts to her "natural habitat" :) So far she is doing quite well and we're looking forward to her "weigh-in" at the pediatrician appointment on Monday.
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We put the letters up on the wall as soon as we returned home. It is so wonderful to have her in the room we prepared for her.

After a bit of a fussy evening Ruby is finally (I think!?) asleep... so we'd better hurry and close our eyes before it's too late.
Sweet dreams!
Adie & Scott

Team Baby McVeigh is HOME!!!

It's been a loooong day so I am going to keep this short and sweet but... You guessed it... WE ARE HOME! We made it safe and sound after a good 4 hours of sleep and many many many happy tears. We are so thankful to our wonderful friends who helped prepare for Ruby's homecoming. Every time I realize something sweet someone did for us I start crying again. I think I need some sleep!

Ruby is sleeping soundly in a bassinet next to our bed and in a short while, we will crawl into (or collapse upon) OUR OWN BED!! I have been missing this bed for two months.

I promise to blog more soon and post pictures but I didn't want to leave you all hanging. So... Join us in a sigh of relief (and some happy tears if you so choose). We made it. We're home. The McVeigh family is HOME. This rates near the top in terms of best days ever.

Good night Atlanta!
Adie

'Twas the night before homecoming...

I just looked at the clock and it was 11:11. I know it's a bit silly but whenever I see repeated numbers on a clock (e.g., 3:33pm) I take the rest of that minute and make a wish... Or two... Or three. Of course I can't tell you what I wished for or it won't come true, but I am sure you have a few guesses given that we're heading home tomorrow. We are going to be nervous wrecks the whole flight home but, as psychologists, we'll try to take some of our "own medicine" by breathing and thinking positively.

I haven't said much about our home away from home since we've spent so much time at the hospital but as we prepare to leave Family House it's hard to express how helpful and meaningful it has been to stay here. When we arrived I described the feeling as being the new kid on the first day of camp. I felt out of place and didn't think we fit in. Over the past month we have come to know some of the other families staying here and my perspective has done a 360. Being focused on our kids and the importance of family is something we all share and we are not so different from each other. I have been touched by the kind gestures our new friends have made- making gifts for Ruby, welcoming us home from the hospital, etc. Not all of the stories have happy endings here yet people are eager to help celebrate the happy news of others. I will miss our friends here and look forward to staying in touch.

If you ever get an opportunity to volunteer at or contribute to a place like this (Family House or Ronald McDonald House) I can tell you these families (us included) appreciate it.

Well it's time to get some sleep. We have a long day ahead of us tomorrow (with a great reward at the end of it).

Good night San Francisco.
-Adie
Sent from my Verizon Wireless BlackBerry

Ruby gets sprung

We're out! We made it! They let us leave the hospital with the cutest baby in the whole building!!
After learning how to operate her little superhero oxygen jet pack... we were on our way. We are still staying at the Family House (just a few blocks from the hospital) so we took Ruby home the old fashioned way- on foot. Ruby may have been born on a Wednesday but she left the hospital on a Tuesday so her Rolling Stones soundtrack fit the occasion perfectly!!! Goodbye Ruby Tuesday....

Here we are on our way out with one of our favorite nurses Christa.

It has all happened so fast and we didn't want to put it into writing until it felt "for sure"... but we have a flight booked for Thursday and WE ARE COMING HOME TO ATLANTA!!! It's been about 2 months since we have been home and we are so excited to sleep in our own bed, lounge around on our own couch, and pee in our own bathroom (it's the little things.. you know?!). We are also excited to introduce Ruby to her big brother Toby when he is able to return home.

We can't wait to see all of our friends and family and introduce you to Ruby. We're probably going to need some time to adjust to being home, etc. but hopefully we'll be up to having visitors in a little while. I should warn you now though... given Ruby's lung issues we are going to be complete and total germophobes and protective parents (for at least the next year)!! She could get very ill if she contracts a cold, flu, or virus so if you have any symptoms, have recently had symptoms, or have been around anyone who has... please keep your distance until you are healthy. Thanks for understanding :)

Here we are arriving at our home away from home...

... and cuddling in bed.

...and THIS my friends is... (ew) a scab. Yes, it's Ruby's belly button scab (umbilical cord). We took a picture of it as a compromise since Scott was tempted to save it as a keepsake and I was NOT on board with that. Lovely isn't it?

Somehow we have collected all sorts of things while we've been here in San Francisco (including a baby!) so tomorrow's task is sorting, packing, purging, and maybe shipping a few boxes home.

I can't believe we're really going home in less than 48 hours!!!!!!!!!!!!!!!
Sweet dreams,
Adie

Ruby packs her bags

We're planning to break outta here tomorrow morning!!! Ruby's echocardiogram showed some improvement and will be followed up in Atlanta. She also completed her oxygen challenge... and failed it (her pulse ox went down too low when she was limited to 17% oxygen) but all that really means is that she will need to fly home with some extra oxygen and will be fine when we land. It also means that we will not be flying anywhere else with her in the next 12 months so if you want to meet the lil' superhero, you'll have to come to us!

So we are leaving the hospital now for one last 5 hour block of uninterrupted sleep (until who knows when). Tomorrow we'll get taught how to operate the portable oxygen concentrator and then, as my Dad likes to say, we'll "blow this pop stand."

There's a part of me that will really truly miss this place (the hospital) and all of the wonderful people who have been integral to Ruby's health and success so far. We have had THE BEST nurses and doctors you can find and everyone has been so friendly and helpful. Thank you specifically to Sue, Christa, Wendy, and Mona (Ruby's primary nurses) and everyone at the Fetal Treatment Center. You ROCK!

Goodnight. Wish us luck!
Xo
Adie

slumber + party = oxymoron

Well... we survived the slumber party but let's just say it was more party than slumber. The party started with Ruby being taken off of all of her monitors; hence cutting off our access to reassuring statistics that reinforced our obsessive compulsive tendencies. We then rolled Ruby down the hall to our "accomodations" (a waiting room by day) which consisted of two plastic couches decked out in plush hospital linens.

before...

...and after (doesn't it look comfortable? they even make a lovely crinkly sound).

I counted and, within the first hour, we must have gotten up to check on her at least five times. Despite our anxiety she was very well behaved, waking up only a few times to eat and get a clean diaper. She didn't even cry, but let us know she was awake with cute little grunty breathing sounds (which we mistook for chocking sounds at first). Scott and I are pretty exhausted today but have determined that we can definitely handle this... on an "every other night" basis. Anyone want to take the night shift on Tuesdays, Thursdays, and Saturdays??

It was pretty cool to wake up on Scott's first Father's Day with lil' miss Ruby. I know every Father's day is special (especially the first one) but today was wonderful in a happy-tears-we-can't-believe-our-luck-are-we-going-to-wake-up-from-this-dream-soon kinda way. Scott and I were both glad we didn't wear mascara ;)

We got the preliminary MRI results back and everything looks great. There is a small bruise on Ruby's brain (which will heal) that is likely a residual effect of her delivery (a.k.a. Pushing large head out of small opening) and would likely be seen in many babies if having an MRI after birth was a "normal" thing to do. So... tomorrow is a big day. 2 more hurdles (echocardiogram and oxygen challenge test) and hopefully we'll get our walking papers on TUESDAY!!

Until then...
Adie & Scott

too tired to come up with a funny title

We're crossing things off of our To-Do list!

Ruby had her second MRI yesterday. The first one was with me (a few months ago) but she was a big girl this time and did it all by herself. It was hard to see her with an IV, sedated, and on oxygen during the procedure because it reminded me of how far she has already come in such a short time and how scary this past few weeks has been. Despite her Mom's worrying, she did just fine and recovered from anesthesia very well. Hopefully we'll get results from the MRI by Monday.

Ruby also moved to a new 'hood (again). This time it's the North wing which is rumored to be the stepping stone to getting the heck outta here!!!!!



Here's a pic of bath time with Mom and Dad. She's looking pretty non-plussed but she doesn't actually mind it that much!

Now here's a funny one. It looks like Mom and Dad are torturing the poor child while smiling. We promise we were just trying to support her lil' bobble head :)

Here's Dad getting some cuddle time...

... and another weigh-in for our Biggest Gainer!!! (20 grams today!)

Here is proof that Scott is a super hubby and Dad. We have a pretty good deal going... I make the dinner (milk) and he does the dishes (pump parts)!

Just for giggles, this is one of the hospital pumps. Doesn't it look frightening? It looks like it was made in the 1800s! Let's just say this thing is powerful and should really require a seatbelt for safe operation.

Tonight we are having our slumber party with Ruby!! We'll report back tomorrow on how many pillow fights we had and how much junk food was consumed.

Cheers,
Adie

The "H word"

Without exception, little Ruby continues to kick a** and take names :) She has been doing all of the normal baby activities- eating, sleeping, and pooping. She got the hang of breastfeeding right away which is great. Some CDH babies can take weeks or even years to eat properly so we are thankful.

Things are going so well that the doctors and nurses are actually starting to use the "H word"- HOME!!! It feels so exciting and a bit surreal when they say "when you go home" and "when you're at home you'll want to..." We're not quite sure when it's actually going to happen. Before Ruby gets her get-out-of-jail-free card, she has to: eat LOTS and keep gaining weight consistently, do another echocardiogram to make sure things are aok, have an MRI to look at neurological functioning and potential hearing loss (very common in CDH babies although the cause is unknown), and undergo a hypoxia challenge. This last hurdle is one in which they put her in a test environment where she only receives 19% oxygen (the amount present on a plane) instead of 21% (room air) so they can see how she might fare on the plane ride home. We also have to "room in" with her at the hospital overnight so we can prove (mostly to ourselves) that we're up to the challenge of doing this baby-thing without nurses by our side!

Until all of these things happen, she just has to keep eating and putting on the baby rolls! She gets weighed daily and Scott and I are always hoping for big numbers. It feels like we are watching a twisted, baby-version of Biggest Loser.


Ruby is getting lots of sleep these days unlike her parents. The crappy thing about hanging out at the hospital all day is we can't really nap when she naps. We got pretty desperate today, however, and snuck across the street to the medical library to fall asleep in the comfy chairs. I think that may become a routine!


We'll keep you updated on when the "H word" gets associated with a date...
Cheers,
Adie & Scott

Look Ma, no tubes!!

Ruby Grace has done it again- another day, another positive development.

We had a number of "firsts" today. We gave Ruby her first tub bath which she tolerated quite well. We also dressed Ruby in her first outfit. As you can see above she is wearing a "Decatur Baby" onesie. This is the onesie I bought and gave to Scott (telling him it was a belated anniversary present) as a sneaky way to tell him I was pregnant. We were so excited!! It was very special to be able to put it on Ruby today, 9 months later, after the rollercoaster we have been on. Hopefully we'll be heading back home (to Decatur) very soon.

The other first of the day was seeing our baby TUBE FREE!!! Her NG tube was removed this morning because she is doing such a good job eating and her nasal canula was removed this afternoon. She is now breathing completely on her own. What an independent little munchkin! All that remains now are a few wires and monitors (for heart rate, pulse ox, breaths per minute). She's come a loooooong way in just 12 days!

Little Miss Ruby Grace is on a roll.

Stay tuned!
Adie & Scott

Got milk?

Geez Louise... We hate to be so predictable but we have MORE GOOD NEWS!! Where to begin...
In the past 48 hours, Ruby has had her chest tube removed (hip hip hoooraaaaaaaay!) AND she also had her "PIC line" removed (line going into her upper arm). Our baby is now tube free with the exception of her NG tube (giving her extra food if she gets too tired to eat it) and her nasal canula. Her nasal canula is providing her with 21% oxygen- this is the same % as room air (like you and I breathe) so right now it's just the air flow that's helping her.

Ruby has been doing a SUPER job eating as they've continued to increase the amount of milk per feeding. Yesterday we started breastfeeding and it's a little bit more work for her but she has been doing AWESOME. Let's just say she's "putting the girls to work!"

They still haven't talked to us about how long it will be before Ruby goes home but it's starting to feel more real and Scott and I are a bit worried... What will we do without 24 hour nursing assistance??! We'll cross that bridge when we get to it.

That's all for now folks!
Cheerio,
Adie & Scott

Baby hits the bottle

We've got quite a few updates for ya! Baby moved to a new neighborhood today... still in the Intensive Care Nursery but no longer in the "sick corner." I think it's a good sign that her new digs are one step closer to the door ;)

She also moved into a real crib (as opposed to the isolette) since she seems to be doing a great job maintaining her temperature and, therefore, does not need to sit under the warmer light like a roasted chicken :)

They removed her arterial line (icky needle going into the artery of her right wrist) so she now has two free hands with which to attempt pulling out tubes, etc.

Ruby's biggest accomplishment of the day was drinking from a bottle for the very first time. Up until now she has been fed via a tube in her nose. It was hard work for her to breathe and eat at the same time but she did awesome!! She has been out of her crib cuddling with Scott or I most of the afternoon and we both agree that rocking a baby is a surefire way to get veeeeeeery sleepy. Who needs Ambien?


Here's baby having her first bottle...

followed by the big yawn...

...and this is what our nurse Sue calls the "titty coma."

So, you may ask... Ruby is doing SO well...isn't she going to be able to go home soon? We sure hope so, but there are a few things that still have to happen. In the next couple of days they will be increasing the amount of milk she gets at each feeding. After that happens they will take out the tube in her side that drains fluid from her chest cavity (this will make her MUCH happier!). Then she needs to figure out how to eat and breathe at the same time (consistently!). All of this could take weeks and she still may go home with extra oxygen and/or a feeding tube if needed.

Given all the positive news you've heard, you can probably guess that Ruby is on the good end of the spectrum as far as CDH babies go. We can't believe how lucky we are. We are so excited and hopeful to see continued progress but we are trying to stay even-keeled about it all. It's too scary to take it for granted and seems silly to worry about what could still go wrong... so we are just trying to take it one day at a time.

Thanks for all the messages and comments! We have been in such a bubble lately... spending all our time in the ICN with little contact to the "outside world." We promise we'll emerge eventually but until then we miss you friends and family!

xox
Adie & Scott

Holding our baby is better than crack

... Not that I've tried the latter, but you know what I mean :)

It was a HUGE day for Ruby McVeigh and her parental "units." It started off with Ruby being taken off of her ventilator!!!!! Yay!!! She now has a small canula in her nose that provides her with extra oxygen but there is no machine actually assisting her breathing. This is exciting for a few reasons: Ruby is a LOT more comfortable without a tube going down her throat, she can actually make noise and cry now (although she is quite hoarse from the tube and quiet due to her weak lungs), AND she no longer has a tape moustache!!! Here is the first pic of our beautiful baby where you can see her face without "facial hair."

The next piece of good news is that Ruby is tolerating and digesting her feedings well. It is so nice to know that all of my time spent as a slave to the pump is being put to good use and is making our baby happy. Here is a pic of Ruby getting some of mama's milk.

The BIGGEST news of the day is that we were able to hold our baby girl for the first time this afternoon!!! She still has her chest tube in but the nurse said it was okay. I cursed myself for wearing mascara today as the happy tears started flowing (silly me thought I could get away with a tear-free day!). This was another one of those movie moments we'll remember for a loooong time.
First Mama got to hold her...

Then super-Dad got his turn...

I think we're hooked! We'll sell you a hit for $50 bucks ;)

...and last but certainly not least, Ruby's new cousin Kennedy Adell McVeigh was born this afternoon !!! Congratulations to Jason & Jen. We can't wait for Ruby and Kennedy to meet each other. I also have to say (while green with envy) congratulations to Jen on her speedy labor and delivery. Drinks are on YOU next time!

Much love,
Adie & Scott

Ruby's Boobies (rated PG-13)

You'd better not be bored of good news because we have more of it!! Ruby started "getting feeds" today (ICN-speak for "getting breast milk via tube"). She was not a happy camper when the nurse shoved a tube up her nose (duh...) but hopefully she will enjoy her new meal delivery service :) Since my life now revolves around hooking myself up to a machine in order to pump every 3 hours, I figured the title "Ruby's boobies" was appropriate!


In other random updates, Ruby is pooping up a storm (HA- we are true PARENTS now! Reporting on our child's bowel movements!!) Her swelling is also going down and she looks a bit different every day. She is being slowly weaned off of her morphine right now and is doing well with it but there are a few times during the day when she gets into a tizzy and is very hard to console. It is so strange to see her so upset but not making a sound (due to a tube being between her vocal chords).

Here is a pic of Ruby that shows her hair. I know a few of Ruby's soon-to-be friends who are jealous of this lil' fuzz.

I am recovering from "baby-birthing" quite well and am walking (not waddling) a little bit faster every day. I smile to myself and consider it a mini-victory when I overtake someone in the hallway ;)

We'll tell Ruby to keep up the good work so that we have more to report next time!!
Adie & Scott
Xox