At Home - Week 1

It's been a little over a week since Quinn came home --- and it's been a little over a week since I slept more than 2-3 hours in a row :) We are incredibly grateful she is home and doing really well. What a nice treat it has been to only have to walk down the hallway to her room to pick her up instead of driving the 30+ minute drive to only really be able to stand at her bedside.

Wow - the weird thing is that I can't remember what it was like now to just have one baby at home, just like I really don't remember what it was like not to have babies at all. Truly a gift.

That being said, there are of course little stresses... Quinn came home with both a pulse oxgyen monitor and a full blown 6 foot high oxygen tank with 50 ft of tubing now running through my house (I actually have no idea if it's 50 ft or 50 yds, my husband is the engineer and math guy, not me). Anywho, tubing is everywhere and all 3 of us (Me, Matt and the dog) do our best to avoid tripping over it while running down the hall to grab a crying baby. Thank God for the nightlight that saved my life last night.

The pulse ox monitor is actually preferable to an actual apnea monitor -- there tends to be less false alarms and they aren't as difficult to get rid of later when Q has outgrown the apnea. Basically, it monitors her oxygen levels and heart rate and when her oxygen level desaturates to lower than 80%, the alarm sounds. For a baby with a "normal' heart, typical saturation levels are 98-100%. Quinn's are generally in the upper 80s and sometimes lower 90s --- that's actually really quite good for someone with her heart condition. Luckily, with the exception of one day when we were having a fight with the monitor, it really hasn't gone off much and isn't as scary as I thought it would be. The only time she has truly dropped her levels is when she has gotten herself really upset crying or when she holds her breath for a moment while pooping or farting (but don't we all do that??!! ha. Too much info?)

But for the most part, it hasn't been as bad as I feared - and actually provides some measurement of comfort, especially when she's sleeping. She is a really quiet sleeper so this way I know she is breathing. But to date, we haven't recorded or seen any true apnic spells. Thank God!

Our other area of trial is her feedings -- while she ate decent in the hospital, she would still sometimes have times where she would only take an ounce or less. When we left the NICU, they instructed us that she needed to take at least 18-20 ounces per day on her high-calorie (read: stinky ass) formula. Talk about stress for new parents of twins...we have been so hypervigilant about her feedings and it was stressing both Matt & I out big time. Fortunately, despite our fears, she did end up gaining weight at her pediatrician appt a couple of days after we were released. And now in the last 2 days, we have made marked improvements and finally hit our 18 ounce goal yesterday. I feel so badly because it seems like all I do with her is try to shove food in her mouth and then do everything possible to keep her calm so she doesn't spit it all up. That means I can't really lay her down on her playmat yet or swing her in the obnoxiously large swing in my living room. Poor little girl. Hopefully it is all short-lived and one day soon she will be able to!

It has been so fun though to get to see her personality come through now that we are home. She is typically a pretty content baby... but wow, when she's not happy - the whole house (and perhaps the next door neightbors) know about it. Little one has some lungs on her! But once she gets what she wants, she is good to go and back to her peaceful self. She is really starting to fill out more now and I love playing dress up with her. We play dress up a lot since she runs through about 4 outfits per day thanks to her reflux :) But that's good, because she has a closetful of clothes to get through!

She LOVES to cuddle and my heart just melts when she presses her little head into my chest. So sweet. And her features are so darn petite and cute, I just want to eat her up. She is definitely a willful (stubborn?) child and will not be convinced to do anything she doesn't want to do. I can only imagine that those same traits will give me heart attacks when she's a teenager. But her fiestiness will be so important to her as she faces her heart surgery -- and it's probably why she has done so well throughout her NICU stay and transition home. And while slightly stubborn, she's also pretty darn sweet and will greet me almost everytime with her toothless smile.

I consciously try not to compare the twins too much but it's incredibly hard not to since that's the only baby reference I've ever had. Plus it's fun though to see the massive differences between them. Where Ryan sounds like a cross between a neighing horse and an obese 60 year old man when he sleeps (seriously, he makes the most bizarre sounds), Quinn sleeps with just the tiniest little purr. And Ryan makes the biggest mess when he eats, sloppy, drooling (just like a man?), Quinn eats incredibly daintily and hardly loses a drop out of her mouth. Until she vomits it all over my shirt 30 minutes later. But whatever. It's polite going down.

Ryan for the most part has been really unchanged by the arrival of his sister --- they are pretty much oblivious to each other's crying or poop smells. They only interact when Matt and I forceably make them face each other or kiss each other. Although Q gave Ryan a pretty good swat today. First of many, I'm sure.

Life at home during the day is dramatically changed but more to come on that later --- I may have the posts in mind to write, but never enough time to sit down and actually write them. No matter the sleeplessness or sometimes feelings of helplessness and incompetence to actually do this parenting thing, life is very very sweet right now. Our lives are forever changed and I thank God for that.

And pardon me if this post isn't exactly totally coherent. Sleep was virtually non-existent last night and I am literally on my 5th diet coke today. Now time to go hold my milk-drunk babies.

Quinn is HOME!!!

More details and story to come later --- but our little girl is home. Thank you all for your faithful prayers. God is so good!

Precious Moments

First Date Night @ Pappas Steakhouse. So Yummy!

Ryan @ 6 weeks


Quinn @ 6 weeks

Today we won't blog about how Quinn was a day or so from release --- only to be delayed again. And we won't talk about once she comes home, she will probably be on some type of monitor and most likely oxygen. Today we will just cherish the sweet moments of these little babies.

Ryan and I visited Quinn today -- and man, was he grumpy! But that's again Momma's fault for mistiming our arrival down there to coincide with his feeding. Anyway, FINALLY both babies were awake at the same time and we were finally able to get them some special "twin time".

They stared into each other's eyes for a good period of time --- and then, just as I thought my heart would burst with happiness, Ryan reached out his hand and grabbed Quinn's. Oh My Goodness.

Now, I realize the cynics out there would not believe he actually knew what he was grabbing or that he even cared it was his twin sister --- but who cares. It was adorable and made for a great picture moment. Love those precious moments.

God is good,

Quick Princess Quinn Update

Test results are back - it's not the acid reflux causing her apnea (although she still does have reflux). They are referring us to the pulmonary docs tomorrow who may ultimately run more tests, do a sleep study, or just decide to release her on a monitor to come home.

I wish I had more answers. Every day that passes seems to bring more questions than answers. But preemies are predictably unpredictable. Who would have thought that this would have gone on so long while Brother has been able to thrive at home? It's just one of those mysteries.

To be honest, I had a horrendous afternoon yesterday after getting the news of her results. I didn't think I was really getting my hopes up that much --- but apparently subconsciously I was. And it just crushed me. I haven't allowed myself to have too many of these pity parties - but last night, I lived it up :)

But through my despair and my sadness, I just kept thinking of this song that I love by Mercy Me, "Bring the Rain". Jesus, bring the rain --- if it allows us to draw closer to you in the end. I try not to question God during these times, although it's hard. Sometimes I just want to be able to call him on the phone and be like, "Seriously, God? Enough?" :) ha. Not so much. But it's part of His plan and we can praise Him in the storm.

http://www.youtube.com/watch?v=e8HgAVenbUU

God is good,

Mommy & Daddy @ 1 Month

Since the babies get monthly updates, I figured Mommy & Daddy should, too! We are doing well now that we are 5 weeks in. Better than I thought we would, to be honest. Of course, exhaustion is present but not unexpected. We are just full of joy having our babies here with us. The love we have for the twins surpasses anything that I could have ever imagined. And the love we have for each other has only multiplied.

I am so proud of Matt and how he has adjusted. I think he was made for fatherhood. He does so much for our family, going to work every day for long hours, visiting Q on his lunch breaks, then coming home immediately to relieve me for some "Meggie Time". I feel so blessed to have such a supportive partner. Last night he even took the 10:30pm and 3:00am feedings so that I could get a full night's sleep (which is the only reason I am able to coherently write any sort of blog posts this morning).

I am recovering well from the c-section and starting to walk about 20 minutes a night, mostly for a stress reliever but to also help kick-start my fitness routine. As much as I am looking forward to being released to run again, I am dreading it because I know it is going to HURT after not being able to do anything the better part of a year. And mentally, I am doing ok too - small touch of the baby blues here and there but nothing too bad. Of course, both of us are emotionally stressed to still have Quinn in the hospital. Nobody anticipated her release taking this long.

We were potentially expecting her to be released this weekend, but again we have been postponed. They did a test on her this past Tuesday to see if reflux was contributing to her apnea spells. The results showed she is having some reflux so they started her on Prevacid yesterday. Now we will watch her for the weekend and she will be re-tested on Monday to see if the meds are doing their job. She has not had an apnic spell since July 4th so we are just crossing our fingers that everything stays quiet on that front.

However, the testing that they did indicated that some apnea was still present so that's why they are being cautious. We are basically to the point where we need to look for other causes of her d-stats (drop in her levels). Most babies would have grown out of the AOP (Apnea of Prematurity), although there may be some who have prolonged AOP for whatever reason. So we are hoping it is explained by the reflux diagnosis. If not, we will need to investigate other causes - whether it be metabolic, a disconnect in her brain, or perhaps cardiac. The cardiologists really don't believe it's related to her heart defect but who knows. The neo team really isn't concerned yet and is not ready to investigate the "B" and "C" causes of this - and still are dealing with the "A's" -- the most likely causes.

Every day longer that she is in the NICU makes it that much harder for me to leave her. I want to see my baby grow up and I can't believe I have missed much of these first 5 weeks. I know we will play super catch up when she finally gets home. Little girl may just stay in my arms for a week! Today I am bringing up her bouncy/vibrating seat for her to chill in for a little bit today. I want her to experience some of the fun things that Brother gets to have while he is home. She has a large mobile over her crib but since they mostly keep her on her side, she doesn't interact much with that so I also got her a fun mirror that she can see when she lays down. I hope she likes it!

Tonight Matt and I are having our first date night! We have left Ryan a few times with sitters (really, friends & family more than sitters) but that's only been to go to the hospital to see Quinnie or for me to go to a doctors appt. But tonight, we will have a "real" date night - and I am so excited. (Please, no judgment in leaving my baby with a well qualified friend for a couple of hours. I know some people don't believe in that this early. However, for our family and the situation we are dealing with Q's health, it works for us.) It will be so nice to reconnect with Matt without the hum of a swing behind us or beeping from a bottle warmer. Yet I bet that most of our conversation will center around the kiddos -- isn't that the way it works??? :)

Thank you all for your continued prayers for Quinn and the rest of our family. Please pray that the cause of her apnea and heart rate drops is related just to the reflux and will be controlled by the new medicine. Pray that she comes home to us in God's time.

In Him always,

The Twins Turn One Month - July 3rd, 2010

The twins turned 1 month on July 3rd. Can't believe I've had my little blessings around for this long. What an amazing 4 weeks it has been!

Quinn - What You Are Up To @ 1 month of Age:

You are still in the NICU but we are hoping to break you out of that place the middle of next week (July 14th or 15th). Your daddy and I are so sorry you have been in there for so long. Your doctors are working hard to figure out why you keep having some of your apnea episodes. Tests show you are having some acid reflux so now they are starting you on Prevacid to see if that helps things. You have been such a strong, brave girl through all of your tests.


You now weigh about 5lbs 12oz! Our big girl! Most of the preemie clothes I bought you no longer fit so we put you in newborn onesies all of the time. Your doctors say you are the best dressed baby in the NICU.


Mommy brought you up your first headband bow to wear with the largest pink flower on it. The flower is just about the size of your face. I don't think you liked it as much as I did because the petals kept getting in your eyes while you were eating :)


You are still the sweetest little girl. You are much more awake now when we visit and make all sorts of crazy faces. You have such a little personality! You are happy when we hold you but you also don't fuss too much in your crib either. Except if you're hungry...


You are a great eater. The nurses are so impressed with how much you can put away. We are still working to keep the majority of it down since you have some spit up issues, but on most nights you are gaining about an ounce a day.


You will hate us later for recording this -- but little Quinn, man, you have some toxic diapers! Your daddy had the pleasure of changing one of your blowouts yesterday and he put on a gown and gloves to get it done. They think it's a combination of the reflux and the high calorie formula you are on. Wow!


You and your brother still look somewhat alike, but we are starting to see some other features come out in you -- namely, your mouth is exactly like my dad's (your grandfather), and you have Mommy's eyes and Daddy's nose. You are such a beautiful little girl, with petite features and gorgeous skin. I can't wait to see you grow!


Your Gigi came to visit you this past week and she just melted when she saw you. She just wanted to hold onto you forever and you were wonderfully content to just stay in her arms and look into her eyes. It is SO hard for all of us to have to put you back in your crib and walk away. Tears my heart from the inside out. Hopefully we won't have to do it much longer.


Quinnie, you are so loved by us all. Your brother, daddy and I miss you so much and are anxious for us to be a family of four under the same roof. We are so proud of how well you have done with everything you have been through at a tender age. Love you, little girl!

Ryan: What You are Up To @ 1 month of Age:

You are such a good little boy! You really are a pretty easy baby and we feel so blessed. As long as we feed and change you, you are pretty much good to go :)

At your one month appt, you weighed 7lbs 3oz. You gained just about 2lbs in 16 days - whoa! Dr. B was very pleased. You are now on the "term babies" growth chart instead of the "preemie" chart. Right now, your weight and height are at the 5th and 6th percentile but we fully expect that to move up quickly since you are growing so well now! And son, your head is already at the 35th percentile - you are a Clanahan for sure!

You are taking just over 3oz every feeding. You are a good eater for the most part but you will definitely let us know when are finished.

Since you had such a good weight gain, Dr. B said you could start sleeping 4 to 5 hours at night without us having to feed you. We started doing that at the beginning of the week and so far you are doing great with it! Most of the time you go at least 4 hours and have even surprised Mommy a couple of times with 5 hour stretches.

We are still working on getting your days and nights straight. You typically do not want to go to sleep after your 10:30pm feeding and most of the time stay up until about midnight. However, you sleep wonderfully from about 4am-7:30am and most mornings I have to wake you up to eat. We'll get it straight one of these days -- after all, you are still such a tiny thing!

You had your first night in your crib a few days ago and did exceptionally well. I am so relieved you like it! As much as we liked having you close by, we know that you need to start being in your own space. Plus, when Sister comes home, we want you guys in the same room. That way you guys can chat with each other all night :)

Most of your newborn clothes fit now so you are staring to be more fashionable. ha. I got a little sad when I folded up your tiny little preemie sleeper we put you in the first week you came home. I already can't remember you being quite that small!

You still are not a huge fan of bathtime but Daddy and I give you one every night as part of your routine. I keep hoping that one day you will like it. You just don't like to be naked, you modest little boy! But whenever you are done with your bath, we wrap you in a fresh, warm towel and then read you one of the many books we have. You love story time and very often fall asleep by the end of it! Mommy & Daddy love it too and take turns reading to you in funny voices.

You had your first "real" smile during your newborn photo shoot on your birthday. It melted our hearts. But we haven't seen it since so we are waiting patiently until you get it all figured out again!

Ry, your daddy and I love you so much. Thank you for being such a special little boy. You bring joy to us every day and we are constantly amazed (and amused!) by the things that you do and faces you make. Do me a favor though -- slow down!! You are growing too fast :)

Happy 4th from Ryan & Quinn!

My festive babies. We were the hit of the NICU that day.Crib time for the babies
Quinn had a MAJOR blow out in her tutu - good thing we got the pics first! Her onesie was appropriately placed in a Biohazard bag. (When she looks back on this post in 15 years, she is going to be soooo mad that I included that little tidbit.)

Ryan

Quinn and the infamous tutu

Her first time wearing a bow!

Mommy and the spooning babies. This is exactly how they were positioned for 8 months.

Little Quinnie. Not impressed with the 4th of July.

Happy 4th to everyone!