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!

100th Post & A Homecoming Delayed

Wow - so this is my 100th post. When I started this blog back in March of 2009, I never dreamed I would keep up with it like this. Of course, there have been weeks where I have fallen silent, uninspired to write much -- but here we sit at 100. This blog has followed our journey from a mission trip to Brazil, to our infertility struggles, to a blessed pregnancy and now the birth of our children. Quite the year and a half. I am so glad to have a documented version of our story. The good, the bad, and the ugly.

And the unexpected.

Today is one of those unexpected days. Tonight we were supposed to be preparing ourselves to pick up our daughter and bring her home where she belongs. Yet here I sit, writing a blog and thinking mindlessly about what I am going to do tomorrow. Because we won't be picking her up after all. I had wanted my 100th post to be about celebrating the babies' one month birthday and Quinn's homecoming. But my wishes aren't always God's plan.

Quinn had a pretty good apnic episode this morning. When the doctor called to tell me, my heart just sank. Strangely enough, as I was getting ready this morning, I just had a feeling that something was not right today. Call it mother's intuition. At any rate, our princess won't be joining us at home for at least a few more days. After the doctors pow-wowed to discuss her condition, it was decided that no decision would be made about release until at least the end of the week. Something tells me, with as conservative as they have been with her care thus far (thankfully), she won't even be considered for release until next Monday or Tuesday.

I am so grateful that the episode did not happen at home and instead occurred while she was in the care of such excellent nurses. It was a long episode, at least 30 seconds, and she had to be stimulated to come out of it. If that had happened at home, who knows what we would have done. I am not that eager to show off my newly found infant cpr and nursing skills. Leave that to the professionals. Yet, I cannot help but be sad. I just wanted to have my little girl home with us. I want to be a family of four under one roof. But here we are, waiting once again.

I know that in the grand scheme of Quinn's life with us, these extra few days are not a huge deal at all. Yet, my selfishness for wanting her with me trumps that sort of reasoning in most moments. Last week I ordered this precious 4th of July onesie and red/white/blue tutu for her, confident that she would be home on the 4th of July with us. Now it looks like that she'll have to wear that in the NICU. But that's ok. The nurses are just going to have to figure out how to change her diaper around all of that colorful tulle - because my little princess will be wearing her outfit!

In positive news, she is 5lbs 1oz now! Growing girl. This morning she took a GREAT bottle with me which made me smile. She was such a sweet thing in her little pink onesie --- and that little sweet thing attacked that bottle with all of her might! She sucked down 3oz in no time flat and totally kicked her brother's butt in the feeding department. The nurse told me that they all joke about Quinn and how you can just hear this tiny little thing smacking her lips during her feeds clear across the nursery :) That image makes me laugh because it's so true!

And such a fun thing - we have decided that Quinn's little mouth and lips are an identical match to that of my father. It's such a trip to see his features in her. I am so comforted by that because it's like he's watching out for her daily, even when we can't be there. Too cool.

So anyway - homecoming will have to wait but I know the timing is God's, not ours. He obviously knew what He was doing when He encouraged the staff to keep her an extra few days and not discharge her early as some doctor's may have been tempted to do. Thank you, God, for always watching out for us. Even when we don't understand, we do know that Your plan is perfect.

Next up, the twin's 1 month birthday on Saturday, July 3rd. Where did the last month go??? I already get nostalgic looking back at their earliest pictures. In a way, it's already hard to remember them being that small - isn't that crazy??!! Ryan goes for his check up on Thursday and I fully expect that kid to be well over 6lbs. He's not my teeny tiny tot anymore -but that's ok because I know it means he is as healthy as a horse.

Thank you all for your continued prayers for the twins. God is good.

In Him,

R&Q Update - 3 weeks old

Where did the last 3 weeks go??? They have just sped by. If the next 18 years go by this quickly, I am going to be so sad!

Ryan @ 2 1/2 weeks.

Anyway, we are all doing well around here. This past week, Matt's mom Barbara came to stay with us for a few days. It was great having her here and I know Ryan enjoyed spending time with his grandma. It also turned out to be a really good week to have someone to watch the little man, as we had several appointments we had to take care of for Quinn.

Quinn @ 3 weeks - this picture makes me smile :)

First up was Car Seat Education to make sure we knew how to get Quinn in and out of the car seat and to ensure it was safe enough for her. Unfortunately, it looks like we may need to purchase a new car seat -- the minimum on our car seat is 5lbs and little princess hasn't quite reached that mark yet. Plus, the straps on ours are not adjustable enough to fit her small little shoulders. I could tell the woman doing our education felt terrible for asking us to buy a new one, but if that's what we need to do -- what choice do we have? We'll try again this week to fit her in the seat and see if she has grown enough to make our existing one work. Then she'll have to pass a car seat test, which is basically a stress test for all babies born under 36 weeks. They make the baby stay in the car seat for an hour and a half and place them on heart rate monitors to make sure they continue to breathe okay.

Next up was Infant CPR... we had wanted to take some sort of class before the babies were born but just kind of kept putting it off. Now it's a requirement for us to pass before we can bring Quinn home. Anyway, it was a fast and furious tutorial session and hopefully we will remember some of it in case we ever need it. I was really emotional in the class just thinking about actually having to use any of the skills on our children. Talk about a reality check.

Then of course, I had my own doctor's appt to check out my c-section incision and make sure all was healing correctly. Honestly, I am just so surprised by how much this surgery has actually hurt. It's not debilitating pain, but I am definitely aware of it. I thought I had a pretty high pain tolerance after all the surgeries and procedures I've undergone, but this was a whole new level. Anyway, all is fine in that department, thank goodness. Cannot wait until the 6 week appt when I am actually cleared to do some exercise (assuming I have the energy) and other fun things (wink, wink - and assuming I have the energy. ha)

Ryan is really thriving and is such a great little baby. He's up to taking almost 3oz every feeding and is acquiring a couple of new chins :) So precious. I love our little man so much and look forward every morning to kissing his sweet little face.

Quinn is really growing now that they are letting her eat however much she wants. She is also up to about 3 oz every feeding and our doctors are amazed that she can fit all of that food in such a tiny little body! (I'm not that surprised - she is my child after all!) She is up to about 4lbs 12oz and is starting to really fill out. I may be biased, but I think she is gorgeous. Most importantly, she has not had an apnic episode since this past Wednesday! Yay! This means we can start planning our homecoming. The doctors are gearing for a mid-week release I believe, assuming she behaves herself. By then, little girl should be above 5lbs :)

I will be so immensely grateful when we can break her out of that place. I am so ready to have my family under one roof. This past week has been really difficult --- I've consciously tried to keep a positive attitude, knowing that was best for Ryan and our life at home. But this is starting to wear on me. I miss my little girl. I don't want to have to leave her every day.

Before the kiddos were born, I thought I had prepared myself adequately for the potential of a NICU stay. But I never dreamed it would go on this long. Next Thursday will mark the babies' one month birthday. My hope and prayer is that we can take her home before then. I just want my family together. I want Ryan to start interacting with his sister. I want to have 2 babies in my arms.

Yet, having said all of that and my somewhat selfish wants and desires -- I know she has been in the best place to get her healthy and ready to come home. I am so thankful for the team of people who have been caring for her so she can grow. I know they have her best interests at heart.

And prayers are being answered. Last week, I asked for prayers that her levels would stabilize so we could put off her open heart surgery for as long as possible. Well, I spoke to the cardiologist on Thursday and her levels have not made anymore downward drops. He feels that where she is now (in the mid to high 80's pulse ox) is probably where she will stay for a few months. And he is more than comfortable letting her hang out there. She's not struggling to breathe or turning a bluish color (signs that would point to more immediate surgical intervention), so he's very pleased. God is good! Please pray that they will remain stabilized until we can get her little body stronger for surgery.

Thank you all for your continued support and prayers. We are so grateful. The outpouring of love we've received around here as been nothing short of incredible. I think out of the 3 weeks we have been home, we have only cooked dinner twice. The rest of the meals have been provided by our awesome church family and great friends. Wow! Truly blessed.

Will you join me in praying that Quinn comes home next week if it's in her best interest? Momma has an ADORABLE 4th of July onesie & tutu waiting for her :)

Little Princess Update

Just wanted to give y'all a little princess update. After tonight's weigh in, she is about 4lbs 6oz!This is GREAT news --- one of the condition of her release is that she must weight about 2 kilos, which is approximately 4lb 6-7oz. So check one for that.

The other condition is that she cannot have had an apnic episode in at least a week. Unfortunately, she is still having these fairly regularly, at least 1 or 2 a day. The last one was a 3:00pm today when Matt was giving her a feeding. The hope is that as she draws nearer to her original due date (July 3rd) and gains more weight, these will disappear. The babies would have been 38 weeks this past Saturday so we have a couple of more weeks of gestation to go, although it may not take that long. Please pray that these apnic episodes will cease so we can fully focus on her weight gain & getting her home as soon as possible.

We also need your prayers for one other thing. Matt met with the cardiologist on Friday to receive an update on her heart care. They are continuing to keep her fluids fairly low (meaning she only takes about 41cc per feed) so that her system is not too flooded with fluid, which can put more stress on her heart. That is why her weight gain has been somewhat stunted up until now - they haven't wanted to overfeed her and make the situation worse. As she grows, she will be able to tolerate more in her feedings. The cardiologist was pleased with her feeds and her growth, all good news. However, one area of concern was that some of her stats are starting to make a downward trend. Specifically her pulse ox levels, which measures the amount of oxygen flowing in her blood. It could be the first sign that her heart is beginning to have trouble and could potentially indicate that we will need to intervene sooner rather than later surgically to begin the heart repairs.

Having the surgery does not necessarily indicate more danger for her or her prognosis to lead a normal life. However, having the surgery earlier means that most likely they will not be able to do the complete repair as hoped. Instead, she will likely need 2 surgeries to complete the entire repair -- the first one for a temporary fix & the second to completely take care of the problem.

Obviously, the better option for Quinn is that we are able to put off surgery as long as possible - hopefully to 4 to 6 months of age. So will you please pray that her stats are able to reverse and her little heart will begin pumping more efficiently? We just want our little girl home for as long as possible before she has to undergo any other medical intervention.

Despite the stress of having a newborn at home and one in the NICU, Matt and I do realize how immensely blessed we are. I read a blog yesterday of a little boy who was being treated in Dallas for a devestating congenital heart defect (CHD). They found out at about 21 weeks about his issue (around the same time we found out about Quinn) and knew that the prognosis wasn't great. They made all the same calls and had the same appointments that Matt & I had. They even actually looked into TCH just as we did and eventually settled on treatment in Dallas. Their little boy was born about 4 days after Ryan & Quinn and in 5 days, had at least 4 surgeries to attempt repair on his precious heart. This weekend, their little boy lost his battle and went to be with Jesus. I cried as I read that blog last night and heard the news. So as bad as we may feel that Quinn is going through her issues, and even knowing that her survival is not 100% guaranteed, we know that the situation could be much much worse. Please pray for the family of this sweet baby boy as they grieve through what has to be one of the most painful losses anyone should have to endure.

Thank you, God, that our sweet little princess is doing well despite having a "different" heart. Thank you that she is gaining weight and continuing to maintain her spunky attitude. Thank you that her big brother continues to thrive and grow at home. Thank you for the entire medical team that has worked to assist our daughter - every single neonatologist, cardiologist, attending physician, pediatrician, nurse, and volunteers who rock her when we can't be up there. We are so grateful. She is in the best hands possible, and in Your Arms ultimately.

Oh --- and a little fun fact for the day...everyone keeps asking me if we have seen Jen from TLC's "The Little Couple". (If you haven't seen that show, you really should watch one night. It's about a "little couple" in Houston and they have to have one of the sweetest & most genuine relationships I have seen.) Anyway, Jen is a neonatologist at Texas Children's and works in the NICU there. Ironically, the first day we were in the hospital, Matt was going down to the NICU to see Quinn and saw a little figure in a white lab coat get off of the elevator right in front of him. He quickened his pace to catch up to her and asked her how she was doing :) Now, my husband has seen seriously maybe one episode of the show just in passing, but even he knew about her. Anyway, she was very sweet and said she was doing great that day & in conversation Matt told her about Quinn. She said that where she was located was not in her rotation but assured him that everyone would do what they could to keep Quinn safe and sound. What's really cute is that all around the NICU they have these hand sanitizer dispensers about 18 inches off the ground for her - and have a couple of little stations with low-lying sanitizers, a step stool and purple gloves. Pretty fun. At least it takes some of the sadness out of going to the NICU - we can be on "Jen Watch" :)

Anyway, thank y'all for your continued prayers. Here's our little princess picture for the day!