They do love their football...

Never too early to brainwash. The twins have been introduced to the beauty that is gameday Saturday. Quinn is a big fan of Kirk (we all know why, wink wink!). Ryan likes Lee but thinks he is one step away from being completely off his rocker. They watched football all day Saturday and loved it.

But really, who wouldn't? They had the coziest seats in the house (their bouncy/vibrating chairs) and all they had to do was drink some formula now and then. Pretty good deal. Matt & I are trying to figure out how we can justify purchasing adult-sized bouncy seats.

Only we probably wouldn't just drink GoodStart. Perhaps something a little more refreshing :)

Feeling Sentimental...

I should be sleeping. But as with most nights, I have a hard time getting my brain to shut down at the same time as my body. My mind races with thoughts --- mostly of schedules, babies, bottles, dinner. I've always had difficulty sleeping, but "back in the day", my mind along thoughts of selling checking accounts, acquiring investments, the latest marketing scheme --- what I thought were important thoughts at the time. Not so much. The babies. That's what I think of these days. It's difficult for it to not be all-consuming...we are pretty much homebound so cabin fever runs rampant and I am becoming increasingly addicted to facebook to see what's happening in the "outside" world. Sad, huh?

 But how sweet that my days and nights are filled with these 2 little ones.

We for sure have days and nights that are not so sweet. Quinn is still a very difficult feeder and does not take much more than the minimums the dieticians have set for her. It's a source of stress for Matt and I, counting up every little cc and wondering how much that last spit up set her back. And the beginning of the weekend was extremely hard -- she received her 4 month vaccinations early in case something happens prematurely and we have to go to surgery. Her 2 month ones did not seem to faze her in the least --- but these. Whoa. She screamed and screamed. She screamed because she was hungry. And as soon as the bottle would go to her lips and she would take her first swallow, she would scream again. It was awful. 2 days and 2 nights of that. She may have had a low-grade fever, but we were giving her Tylenol preventatively anyway, so who knows. 

But before even the shots happened on Friday morning, Matt & I had already made the decision that the little girl was needing a middle of the night dream feed. The babies have really been doing a decent job of sleeping through the night. They will do it consistently for a few days and then fall off the wagon. Then they will rally like champs and sleep 10-12 straight hours. Pure bliss, one would think. However, while Ryan makes up his extra calories during the day that he misses at night, Quinn does not.  She refused to take one drop more out of her 5 bottles, so she was left with at least a 100cc deficit. No bueno for a child you are trying to get to gain weight. And we fought for those cc's all week long to no avail.

So Friday night (after a lovely MNO with my girls), I woke up the littlest angel for her bottle. And after fighting bottles all day and having her scream bloody murder each feed, I have to admit I had some trepidation to wake the beast :) ha. But I knew she needed it, so I tip toed in their bedroom and lifted out the sweetest sleeping beauty. I got her settled down in the living room on her boppy and lifted the bottle to her mouth hesistantly. My nerves were just shot after the day we had. But wouldn't you know, she didn't make a peep, kept her eyes closed tight and sucked that thing down, just like her brother. I truly cried tears of relief.

 Just that morning, we had an appointment with an Occupational Therapist to evaluate Quinn. We are not overly concerned with her development - she seems to be right on track with her fine motor & social skills for a 3 monther, but she is a little behind on her core strength. Not surprising for a preemie baby that was in the NICU on her back and side all day for 7 weeks. They estimate she is acting like that of a 12 weeker, so only a few weeks behind which is relieving to us. However, one thing she did notice (and Matt & I had recently discovered), Q seems to get lazy in her eating and not fully "suckle" (yes, suckle vs suck? - there is a difference). Anyway, where her brother wraps his full mouth around the bottle, Q typically eats like a little bird and just barely sucks on the tip of the nipple. She works furiously hard on that tip, ends up wearing herself out, and therefore only has enough energy to finish half a bottle. So, she gave us a few little tips (increasing from medium flow to fast flow nipples, etc). I really didn't think they worked at first.

But then today, fully recovered from her shots, she had an AWESOME day eating. I can't tell you what that feels like, after 8 weeks or so of having to struggle through most feedings. I almost felt human again. And she was so precious. After each of her bottles, she would give me this big grin, like "I told you I could do it, Mom. Just be patient with me." Lesson learned, Quinnie. Momma needs more patience.

But getting back to the point of this post --- with the babies mostly sleeping through the night, long gone are the every 3 hour feedings or even every 4 or 5. Now Ryan goes down at around 7:30pm and sleeps all the way to 7am (most days unless he is having a really off night). Quinn goes down a little later, around 8:30pm and sleeps pretty well until 3am - and usually then she is satisfied with getting a pacifier until about 5:30. So while I certainly appreciate the extra hours of sleep for sure --- I am feeling sentimental about not having our night feeds anymore. There was something so peaceful about one at a time, all quiet and dark in the house, and just me & the baby. There were some sweet bonding moments in our late night feedings. I loved watching them eat, not even opening their eyes, but sucking that bottle with all of their might. I loved hearing them breathe deeply after they were done and thoroughly exhusted, and their warm breath on my shoulder when I put them back down.  Sweet, sweet moments. So, I don't mind so much if we have to do a dream feed every now & again for Quinn. It's our little time to bond without the craziness of the day taking over.

And I'll try to remember how sweet those moments are if they wake me out of my coma tonight :)

In His Hands,

Meagan

Riding a Roller Coaster

So last week we talked about Q's surgery taking place anytime in the next 2-4 weeks. I truly spent all weekend coming to grips with that development and thought I had made my peace that it was happening just a little sooner than we anticipated.

Then of course, the phone rings Monday morning. It's our cardiologist -- I'm thinking he's going to let me know who is assigned to her surgery and what the date will be. But noooo... instead I'm told at this time, there will be no surgery, at least not for a few more months (hopefully).

When the surgeons at TCH met on Monday morning to discuss Q's case, they did not deem her pulmonary artery and branches large enough to be able to perform a full repair. If they just did a partial repair, she would be left with an "artificial" artery that would have to be replaced in her elementary school years and then again when she was a teenager -- & then perhaps as an adult. So after looking at her most recent echo and her saturation levels (somewhere in the mid 80s), they really feel it's in her best interest to continue to wait and give her a chance to grow -- and hopefully the artery will grow along with her.

There are other options for her in case her stats start to drop again - primarily a shunt in her PA or even putting a catheter with a balloon to open up the artery. However, those are for the "just in cases". Either of those could open up her PA too much and allow too much blood flow to her lungs which would be very dangerous for her. If that were the case, it could be managed with medication until the time she became large enough to have the full repair.

At this point, the surgeons would really like for her to be at least 16lbs for the operation - so we are looking at quite a bit of time down the line, perhaps another 4-6 months at least. Again we return to limbo and just are in "watchful waiting" - monitoring her stats and weight regularly and just wait until "go time".

 My emotions are mixed through this whole thing. I trust the doctors and I know they ultimately know what is best for my little girl. However, I did have a measure of excitement for Quinn, knowing once we got beyond the proposed surgery, she could be like any other baby. But obviously, knowing now that a surgery at this time would force multiple other surgeries, that's obviously not the best road for her.

So for now, we continue to keep Q somewhat shielded --- no grocery store trips, church nurseries, or having lots of visitors. It would be devestating for her if she got some sort of infection and would speed up the entire process -- not what we want at this time. We are praying that our insurance will cover the RSV shots for both Q & R to give an added layer of protection, and of course Matt will get his flu shot to prevent bringing home any extra germs (unfortunately I cannot receive a flu shot due to my allergy to eggs, but seeing as how most of my daily contact is with the mailbox and my computer, hopefully I don't bring too much of an added risk!)

Thank you all for your continued prayers for Q. We ask that you specifically pray for her levels to remain stable, that she will continue to grow, that her feedings will improve, that insurance would cover the very expensive RSV shots, and that above all else, that Matt & I can provide as much of a normal "babyhood" as possible in the midst of all these procedures, dr appts, tests, and monitoring.

In His Mighty Hands,

Happy 7th Anniversary!

7 years!

It's been 7 years since I walked down a green carpeted aisle to say "I do" to the man of my dreams. I look back now and wonder if we had any idea of the wild ride we were in for on that beautiful September afternoon. Probably not. But we knew that we loved each other deeply and that we were "it" for each other. We were and still are, each other's lobsters. (Inside joke: see Ross & Rachel, Friends circa 2001 or something)

Matt, you make me a better person each and every day. You've taught me to love and to be loved. You are my forever partner.

Years ago when we first met and I told my mother that I had met "the one", she asked me how I could possible know that. I told her I just did, but one main reason is that I could just see you being an amazing father to my children. And boy, did I get it right on that account. You are an incredible daddy to our precious twins. Seeing you with them just makes my heart smile. Thank you for loving me. Happy 7 years - and here's to many, many more -- and for 7 being a lucky 7 :)

Love you,

Ryan & Quinn are 3 months old!

Ryan & Quinn - you are 3 months old! (Well, actually you are a little older than that right now because Mommy is slightly behind on her updates - shame on Mommy)

Your Daddy & I can't believe it has been 3 months since you came into this world. And yet, we can't really remember you not being a part of our family. We love you both so much and feel so blessed that God chose us to be your parents. Be patient with us, we are still learning about this parenting thing and we have made many mistakes along the way. But hopefully we are getting some of this right. Thank you for loving us.

Ryan - What You Are Up to at 3 Months Old!

You are (were) 11lbs 6oz -- our big boy! You are such a good eater and take anywhere between 4 and 6 ounces depending upon your mood. You now rank in the 12th and 15th percentile for weight and length respectively - but Dr. B is positive you will catch up even further in just a few months.

You are now wearing all 3 month clothing! Yikes! Mommy cleaned out all of your newborn stuff the other day and perhaps even shed a tear (or 5).

You are a great sleeper! Shortly after your 3 month birthday, you slept through the night! And now, you have consistently slept from 8pm to 7am for the last 5 days! Thank you, son :) You are also a great napper - you always take 3 naps a day, usually for about 1-2 hours. We tease you and say that you have narcolepsy (and yes, I looked that up to confirm spelling) because you will just fall asleep anywhere and anytime.

You are getting really good at tummy time and you love it. You are going to roll over any day, I just know it!

Your "tooth" we thought you had --- well, it wasn't one. It was a gum cyst. Who would have guessed --- guess we have a few more months for that!

You are a great self soother. You will lay in your crib and just suck on your hand until we come get you. My little patient man!

You smile a lot now! And you pretty much are giggling which is the most precious thing ever.

You love to swing & play in your bouncy seat. But you always turn your head to one side (over your left shoulder) and pay little attention to what's happening on the right side. We have to force you to look the other way sometimes.

You LOVE TV - especially football. Ooops :)

Quinn - What You Are Up to at 3 Months Old:

You are (were) 9lbs 6oz! Wow, little girl - you have grown soooo much. You have chub everywhere and I love it :) You have come a long way from 3lbs 13oz --- and the 3lbs 4oz that you got down to. Good job, Quinnie.

You are mostly wearing all 3 month stuff but can still squeeze into some newborns. Your 3 month clothing is pretty big, but it's so precious, I can't help but put it on you. I love to accessorize your outfits and you pretty much wear a bow everyday whether we are going somewhere or not. I think you actually like the bows (at least that's what I tell myself!)

You are almost sleeping through the night! Just like your brother, you slept all night shortly after your 3 month birthday. However, now most nights you wake up at 5am. But still, that's a wonderful improvement from 1am :) Thank you, sweet girl!

You are not a huge fan of naptime. You love your "baby TV" in your crib, but heaven forbid if it times out and turns off. However, sometimes you are just so exhausted you will sleep for a good 2 hours when I least expect it. I think most of the time you just don't want to miss a thing that's happening.

You are so amazingly alert. You love to see everything, touch everything, move around. I think because you spent so long in the NICU, you are trying to play catch up. You are easily bored and I have you on a constant rotation from bouncy to playmat to swing to Mommy's arms. I love your spirit and that you just want to soak it all in.

You have gotten so good at smiling and cooing this month. You melt your Daddy's heart when you give him a big gummy smile and a laugh. He can't resist you.

You really are looking so much healthier now --- you have started to really fill out & your color looks great. However, your eyelids are getting blue now when you feed, but we know that's because your heart is working overtime to operate that sweet, petite body. Surgery is coming unfortunately in the next 2-4 weeks, but we trust that you will feel sooooo much better after this is all finished and over. You have been an AMAZING trooper through all of your tests and dr visits. Honestly, you have done 100 times better than your mommy. We are so proud of you.

Ryan & Quinn, you are the most blessed gifts your Daddy and I could ever have. We love you so much.

Getting the ball rolling

It's been an interesting day to say the least...what was supposed to be a relatively quick 3 hours at TCH turned into a 6 or 7 hour extravaganza. I'll start from the beginning...

If you remember from last week, we were able to remove Q's oxygen. It was a HUGE step for us and quite the relief. We were still keeping her pulse ox monitor on at night and then just checking her pulse ox periodically during the day. From Thursday to Saturday she did fabulous. Stats were good and nothing abnormal. However, from Sunday on, her stats periodically began to drop. And on Monday night, I was up virtually all night hearing her monitor alarm me that her saturations were consistently falling below 80. They were not staying there for long, maybe 30 seconds or so, but pretty much happening every 15-20 minutes. Now, our cardiologist had warned us about this --- eventually she would start trending downward and doing what they call "resetting her baseline". We just thought we would be maybe a month or 2 more down the road before that happened.

So on Tuesday I called our cardiologist to let him know it looked like she "reset" from about 87-88 to around 82-85. We were scheduled to see him on the 13th but he decided to get us in this week if possible. Thankfully he was able to schedule an echo for us this morning (Weds) and then he would talk to us afterwards. Well, as soon as they started the echo just to check on her pulmonary stenosis (don't ask me to explain exactly what that is or what it means!), it was noted that it had definitely worsened from her previous echo performed at about 4 weeks of life. At that point, he decided to go ahead and do a full echocardiogram/full pre-surgical workup. Unfortuntately, that meant they had to sedate little Quinnie so they could get all the pictures they needed. My heart just broke at that - especially when she woke up and you could tell she was just all confused and out of it.

After the echo & recovery in the "tranquility room" (which was NOT the tranquil place for Q since she showed everyone just how loud she can howl), we moved back to the clinical side to meet with our cardiologist and his boss (fellow?). Basically it was decided to get Quinn on the surgery schedule in the next 2-4 weeks. While she is not quite as big as they had hoped, they still think they can do the entire repair in one surgery. She will be "presented" to the surgical team at their weekly meeting on Monday and then we will find out shortly thereafter the date of her consultation & surgery, including who her surgeon is (we have requested only about 200 times for one particular doctor - and God willing, if his schedule is open, that's who it will be).

So all of this is happening a little fast --- I really thought we had more time to fully prepare, but quite frankly, I'm not sure you can really be prepared for your child having open heart surgery. In a particularly comedic turn, for about an hour today, I thought we would be having her surgery tomorrow -- our surgeon had an opening and it was between Quinn and one other baby on who would get the spot. I just about had a heart attack when the cardiologist mentioned that to me and breathed a silent sigh of relief when the other baby got the spot. That was actually good news because it indicated that our surgeon felt confident that Q was not that urgent of a case, at least not to have surgery in 24 hours :)

And to answer a popular question, no, her oxygen will not be going back on. With Q's particular condition, too much oxygen in a failing heart could potentially flood her lungs and end up doing way more harm than good. I don't understand all the dynamics behind it because high school Biology was my first "C" so I won't try to explain it much more than that. Now that her heart is starting to show signs of distress, putting oxygen in her body will not help it at all. The oxygen was basically there anyway to prevent any apnic episodes and extremely low desaturations (like 50s and 60s), which Q has not had in the entire time she has been home and has prayerfully grown out of. As the heart condition worsens, she will spend more time in lower desaturations (mid to high 70s) and the oxygen isn't really going to help with that.

(An interesting side note: I have found that Cardiology and Pulmonology butt heads all the time when it comes to issues like this --- cardio always blames pulmonary issues and vice versa....always fun for the parent to try to figure out the happy median between the 2 and what actually makes sense.)

And I'm pretty sure I completely butchered most of this post and giving the most accurate information -- I really am not strong in all of this medical terminology & how things actually work. But that's why there are amazing doctors --- and Quinn has the Ultimate Healer on her side. Mommy & Daddy do not have to understand all of that stuff, we just have to place faith and our child's heart in God's trusting hands.

We thank you again for your prayers for our family. I am touched by how many have followed our blog and our family's journey. Prayer is an awesome thing!

Coming soon when Mommy recovers from the very long day ---- R&Q's 3 month post and stats!

The Week of Milestones

So this has been quite the week of milestones for the kids and me. Let's see if I can recap:

Ryan got his first tooth last week. Yes, my 12 week preemie cut a tooth. For a few days, he kept putting his hand in his mouth, even right after he ate. So I kept thinking he was still hungry and would try to give him more food but he would refuse. Then came the drooling. So just for fun, I peeked and lo and behold, there it was ---- a little white tooth peeking through. Blew my mind. Luckily, he isn't really fussy about it --- but he still isn't eating the same. Tylenol seems to help a bit but I am trying to be conservative with that and just let him get through it. It would be nice if he was old enough to hold the teething ring I have for him :)

I was a "single mom" for 3 days while Matt was offshore. It really sounded more daunting than it actually was. BUT I REALLY MISSED 5:30pm which is when Matt typically gets home from work and I get a chance to run to Sonic, Walgreens, Kroger or other really fun locales. When you have 2 babies, the whole packing up and going thing just to get a large Diet Coke isn't really appealing. I'm over getting my caffeine high by the time we get out the door. Anyway, the babies and I survived and actually did pretty well. I have a whole new respect for moms who's husbands travel all week or single moms altogether. Not easy.

So that was a milestone --- mommy can keep the babies for 3 days and all are still alive & mommy is sane :) (Well, I was a little bit insane Weds when Matt was supposed to be coming home. I had talked to him earlier in the day and his chopper was delayed. He said he would call before he took off (original flight time was 10am but was estimated to leave b/w noon and 1pm). I was in an appt with Quinn and didn't really think about it again until we got on the road - and oh, my word, it was 3pm and I had not heard from Matt. So I tried calling his cell. No signal. Tried calling his office number offshore. No answer. Ughhhhh. Waited until 4:15 before I went into a somewhat hysteria state. Talked to a very nice man in the control room of the Atlantis rig floating somewhere in the Gulf. Explained my situation and told him that I was worried since I had not heard from him. The control room guy politely told me that the chopper took off late (3:15pm) and if I did not hear from my husband by 5:00pm, then I should be really worried. Thanks, guy. 4:55pm I finally spoke with Matt. Awesome. Heart attack avoided.)

Quinn is off of oxygen!!! Praise God! We had the LONGEST day at TCH for her OCRG test to determine whether that would be feasible or not. But when we left, I just had this overwhelming peace that all was fine and she was going to pass the test with flying colors. And she did! She had zero apnic episodes and never desaturated under 80% the entire time. Her average saturation was 89% which was fantastic. (Again, as a reminder, normal babies saturate 99-100%, but with Q's heart, her normal function will be less. And actually, for explanations that are too lengthy to go into for a midnight post, anything higher than an average sat of 95% would not be good for her). The Dr. was really positive about removing the oxygen and then we will just continue to use the pulse ox monitor to grab baselines during the day & keep it on her as she sleeps. He recommnended only 4 or 5 days for that ---- umm but this mom thinks that one little cord is a massive improvement and I'll probably strap that bad boy on her until her surgery. We will meet again with the cardiologist on the 13th and from then go ahead and schedule her surgery, 6-8 weeks out. So by the end of the year, we should be monitor free, oxygen free, and heart fixed :) yay God!

So as soon as we hung up, I immediately started pulling the oxygen taping off of her little face. After a little fussing, I could tell she was relieved. It will be interesting to see how she is in the next few days when she goes to reach to pull it out (as she always does) and it's not there. I hope it will make her happy :) because it makes this mommy smile to see her without it. Don't get me wrong, I was happy for her to have it before b/c it was keeping her well, but her little body is starting to heal itself from the prematurity and failure to thrive, so it was such a pleasure to take a step forward. One step at a time with this kiddo.

There was another milestone this week, but it escapes me. I'll probably remember it tomorrow when I post for the twin's 3 MONTH BIRTHDAY. OH, my. Where does the time go? We thank you all for your continued prayers. They are working!!! More to come also on my trip to TCH & a OCRG party room :)