And we've turned the corner!!

Two days ago Luke struggled to breathe while on oxygen and was barely taking 1/2 his bottle on every other feeding. It's amazing what a difference 48 hours can make!! Yesterday, the nurses, therapists, and doctor sat down to have a meeting about Luke's progress and decided to change their approach to his care. Rather than keeping him on a strict feeding schedule, they opted to change to "on demand feedings" to see how he responded. Turns out, he is as stubborn as his mom and dad and just wanted to eat when he felt like it. Now, he is taking soooo much more of his bottle at almost every feeding! Plus, the nurses even decided that Patrick and I should feed him to see how he responds. Both of us were completely nervous since Luke is still hooked up to a lot of monitors and is a bit floppy due to his poor muscle tone, but we both rocked the bottle feeding! In order to leave NICU he'll have to eat two ounces at every feeding, so we still have a long way to go, but this change is HUGE.

Today, LUKE WENT OFF OXYGEN COMPLETELY!!!! Yep, this morning Dr. Whittan came in and pulled the oxygen tube and Luke did perfectly a-ok the entire day. Whereas they had been increasing his oxygen as a crutch during feedings, he no longer needs even this. It's fabulous to have one less cord strapped to his poor little face although he still has his tiny little feeding tube in his nose for when he can't quite take a full bottle.

Then, to make the last 48 hours even MORE perfect, Dr. Whittan pulled a few strings and transferred us to a room with a window! Finally, Patrick and I have some concept of day/night while we hang out with the little dude. All of the nurses keep teasing me because I'm so excited for my new window, but it's the little things that make us happy. It's been a good two days.

One more bottle down!

Well friends, family, and random people that have stumbled onto our blog, Luke sucked down another full bottle today! Besides that, they did a chest X-ray to do a followup from about a week ago. That's when they saw that his chest was "hazy". Doc thought it was some of his air sacs closing up from a lack of oxygen getting to them. He has been breathing much better since! He was above 95% most of the time we were there today so this might be the first step in getting his breathing tube out! Yay Luke!

As for us, we can't wait to get Lukie-poo out of the hospital. It's tiring sitting in a small yellow room without a window or a TV for hours on end. When one of us is holding him the other is on their iPhone playing Words With Friends with each other, our neighbors, friends, and even our nurse Miranda! I (Patrick) also read the news, but it's just a long waiting game. We figure we can do this since he isn't sick, just needing practice.

We realized something today. There are around 40 rooms in the NICU but we hardly see any of the other parents. Surely there are parents that spend their entire day up there. Anyway, our bodies are pretty tired and tense (even after being naked on TV) for these last 12 days.

Melissa's mom went home today, which made us all a little sad. So right now it's just us and the dogs at home. While it's kind of nice having a quiet house, it's going to be nice to have my mom back when Luke gets here.

Well that's it for now. We are going to bed (it's not even 9:30 pm). That's how tired we are!

Noches!

Grandma Malone

It's the little things in life. What could possibly be better than snuggling with Grandma Malone all day? Luke was so happy to see mommy and grandma at 8 a.m. this morning that he decided to stay awake for 2 whole hours after his bottle! For those of you who haven't had the chance to meet Luke in person - this is a big deal since the little dude sleeps ALL THE TIME! He looked around, stretched, grabbed our fingers, and snuggled up to us all morning.

Then, Luke needed a little nap before his next bottle, so grandma and I headed down to the Boardwalk to grab some lunch. The weather was absolutely perfect so we ate outside, did a little shopping, and enjoyed the break from the hospital. After 9 months of not really buying much, it was FABULOUS to buy some new clothes!

Luke decided he wanted to be a bit stubborn on his afternoon bottle and not eat much. He obviously wants to come home since he tried to pull the little tubes out of his nose in an attempt to escape the hospital; however, the nurse put the tubes back and told him he had to stay with her a bit longer. Unfortunately, he still has a long way to go before he is breathing completely on his own and drinking a bottle at EVERY feeding. We'll get there though....

"Excuse me...."

Well Melissa and her mom went up to the hospital this morning and spent the better part of the work day with Luke while I was at work. A good friend of ours stopped by to see the little bean. She thought pretty highly of him. If nothing else, he is kind of cute. He takes after his mom!
Ok, no. He looks just like me. Which brings up other concerns, but that's for another day....

The good news is that Luke is making progress. So much so that our nurse at the NICU texted Melissa to say that she had surprises for us. When Melissa go there, she saw that he was in a crib instead of a box like he had been in! We really weren't sure what that meant, but it at least looks more normal, and that counts for something. We'll call that a win!
The second surprise was a bigger deal. He sucked down an entire bottle today! That tuckered the little kid out. He was sleepy the rest of the day. That's the second big win of the day. Luke needs to have a bottle, without tiring himself into a "coma", for every feeding for several days. If you know anything about Melissa, myself, or my family, you would be amazed by this! We are all professionals eaters! Anyway, maybe he will be a late bloomer....
As I left work around 3, I headed up to the hospital to see the little chucker. As I pull up I see the funniest thing...my wife and her mother leaving. They had gotten there at 10 am and were just leaving. Guess there are worse ways to spend your time!
I went up to Luke's room and was just watching him sleep. I didn't want to hold him because he needs his rest, but he twitched like Ralphie dreaming about squirrels! That's as funny as you would imagine it to be, trust me. Anyway, the doc came in and was doing some routine stuff when he reached over me and said "Excuse me!". I looked what he was reaching for and it was Luke's oxygen flow control. He turned it off! Count that as #3!!! We watched to see what his oxgen levels would do and they sank down from 93..92..91..90..89..88............89...90....91...92..93..94..95..96! The doc wants him above 90% and more ideally around 97% or above. So to see him do that all on his own was great! The last thing the doc said before he left was that he wanted Luke to move to a bottle every other feeding. Awesome. Needless to say Melissa was pissed that she missed it, but that's ok. I told her that he was pretty much like he was before the doc turned off the oxygen. She laughed. We will see what Miranda (our favorite NICU nurse) has to report to us tomorrow morning. Here's hoping that he pulled an all nighter and passed his breathing test!

Oh, random note. So we have these 24oz cups that a restaurant in town gives when you buy a drink. They are close to the hospital (kind of) so we end up going there with our mothers. Anyway! I had a glass of ice water in mine which was on the counter as I was writing this blog. My wife asks me if there is anything scary in my cup. I ask her what she means since I don't really make a habit of drinking scary things! She says "you know, scotch". To which I ask her how much scotch does she think I drink at any given sitting!

I mean, it is a 24 oz cup! Besides, if it's not Scotch(ish), its crap!

Daddy's Little Boy

This is Patrick again. Melissa is asleep so I jumped on the blog to say a few things.

We have an announcement to make! It's not that Luke is going home soon, or anything like that. It's much much bigger.....

Luke has a favorite parent. You would think, dear reader, that being with his mother for 9 long months would endear the two together.

Apparently, you would be wrong.

You see, Luke is still in the hospital with just a bit left to ween down on his Oxygen. When his blood oxygen levels go down below 90% all of these alarms go off and the nurse comes in to check to see if everything is ok. Well, when Melissa holds him all he does is set off the alarms! She must make him nervous or something like that. On the other hand, when I take the little dude and hold him, he stays deep in sleep but his breathing increases and his oxygen levels up to 100%! The nurses all tell us that he doesn't go below 90% when we aren't there, so it's just when Melissa holds him, much to her dismay! I ensure that she won't ever forget who he loves more! Haha!

Melissa's mom is in town and today, after we went to the hospital to see the little dude, we drove up to the base to see the airshow. Pretty neat, even the Thunderbirds were good. They didn't fly their entire show and at times it gets boring but I tell you what, when they sneak one of the planes going in afterburner right over the crowd while their attention is elsewhere, well.....let's just say that someone almost peed their pants. And no, it wasn't me! Hell, even our friend's 6 month old slept through the show so it wasn't THAT scary!

Well, off to evening church before we try some wonderful looking eggplant parm from a very good friend. By the way, she still owes me and my mom the recipe for her sausage penne!

One Week

It's not often that I pay attention during the sermon at mass, let alone remember what the priest actually said. However, during mass the week before Luke was born, Fr. Joe talked about the meaning of friendship. He said, "A friend is someone you cry with while an acquaintance is someone you simply spend time with". This week, Patrick and I realized just how many friends we have in our lives. Not only have you shared in the joy of Luke's birth, but you have given us unconditional support during this stressful time. The phone calls, visits, food, facebook notes, blog comments, and texts are what got us through this week.

Luke is making progress! He was on vapotherm which pushed humidified, heated air into his lungs, and now he's been weaned off that to just a low level of regular oxygen. In addition, the speech and physical therapists are impressed at how strong his suck is for his bottle. He's getting lazy from the feeding tube though and likes to fall asleep before he can finish his bottle. Hopefully, he'll gain some endurance this week and will be headed home soon.

Visitors

Sorry we didn't post anything yesterday - it was 10:45 when we returned from the hospital and no post we did was going to make sense :)

Luke started off the day very sad because Grandma Godinez told him she had to go back to Wichita. Luckily, she got to spend some time with him by herself at the hospital so she could hold him without sharing. While they were together, she and Luke made a surprise card for Patrick and I when we made our
visit later in the day. We were just as sad as Luke to see her go since she was a huge help/support though this first week. Thankfully, she can't stand to stay away from Luke for too long, so she should be returning when Luke is healthy and finally home.

Then, to cheer up the day, our friends Suzi and Heather came up to snuggle with Luke. Suzi had been begging for days to pinch Luke's chubby thighs and she finally had her chance! Plus, it gave me some much needed "girl time".

In between all of the excitement with visitors Luke also had another bottle. Although he didn't do quite as well as the doctor would have liked, he managed to drink over 1/2 of it with no problem! His breathing is getting much better though, so he's showing lots of promise after one week in NICU.

Well, this is Patrick posting. Do you know how annoying it is to try and post while being married to an English teacher? It's terrible. Anyway, today was a good day. An old family friend lives here in town and we got together with her since my mom is in town. We took her to see Luke and visited for quite a while about old times. Luke is doing well! His oxygen was weened off a bit and he had his first bottle! Turns out he didn't realize that milk was going to come out when he sucked and was kind of surprised to say the least. We still aren't sure when he will be able to come home, but it's getting closer everyday. One thing that kid likes is to be held by his daddy! We were also able to bring clothes and toys for him, so of course we brought a baby Jayhawk!They like to snuggle together....


In the meantime, we are just biding our time waiting for him to come home. We feel kind of bad not spending all hours at the NICU, but he isn't a critical baby (lot's of very very small babies!) and has plenty of weight behind him, he's fine. Thanks for everyone who has been thinking of us and baby Luke!

Naked on Television

As my mom has always said, I somehow manage to be in the right place at the right time. Today, it landed both Patrick and I naked on television! Being the awesome husband he is, Patrick booked a massage for us since we've had a bit of a stressful few days. Yesterday, the salon called to ask if we'd like to be part of a news story on "staycations". Of course, being the shy people we are, we immediately said yes. So, today while we were getting our massage, the news crew came to the room and asked us about our reason for a little pampering. The news crew and the massage therapists agreed that we had earned our little splurge :)

Luke is doing about the same as yesterday. While I was holding him this afternoon, he decided that it took a bit too much effort to breathe. But, the awesome doctor and nurse stayed calm, gave him some meds, turned up his oxygen, and it was no big deal. Turns out it was perfectly normal for a baby being weaned off oxygen! Each and every single day we thank God for the amazing NICU staff at the hospital. It's great to go home knowing that Luke is in perfectly good hands. We're headed back tonight to spend some more time with the little dude.

Our New Family

When a couple finds out they are pregnant for the first time, they spend nine months envisioning the doctor placing their firstborn in their arms and congratulating them. For us, this vision didn't go exactly according to plan. After three years of marriage and a whirlwind trip backpacking through France, Italy and Spain, Patrick and I returned home from Europe in July 2008 to find out we were expecting our first baby. Nothing was more exhilarating than telling family and close friends that we were finally going to be parents.

To our dismay, on September 24, 2008 the pregnancy ended in miscarriage. Determined to be parents, we went back to step one after we were emotionally and physically healed to "try, try again". Luckily, we quickly conceived by February 2009 only to be devastated when this second pregnancy ended again in miscarriage on April 15, 2009. Due to the unusual nature of the back-to-back losses, we underwent extensive genetic counseling to rule out any problems beyond simple "bad luck". To our relief, everything came back normal, so it was back to square one.

As the old saying goes, "Third time is the charm". After discovering that we were pregnant AGAIN almost exactly one year after our first pregnancy, we held our breath, waiting to see what would happen. Then, on September 10th the doctor changed our life when we saw our firstborn on an ultrasound. Little did we know how much our lives were really about to change.

Fast-forward to April 15th, exactly one year to the day after learning of our second miscarriage. I checked into Willis-Knighton South in Shreveport, LA to deliver my baby. After the easiest labor and delivery on earth, we waited for the doctor to place our baby in our arms. Instead, after some concern about his breathing, he was taken to the NICU for further evaluation. About half an hour later, the neonatal specialist came to confirm not only Respiratory Distress, but also that he suspected that the baby had Down Syndrome.

Needless to say, this is not the moment that we had envisioned for so long. After the initial shock came a torrent of emotions from sadness to anger to fear and everything in between. It literally felt as if someone had hit us in the stomach and all of the air came out of our lungs; we just couldn't believe it. To make it worse, we couldn't go to the NICU to see him.

In the meantime, Patrick and I were going over all of the reasons why Luke couldn't possibly have Down's. We poured over the few pictures that we had the chance to take before he was taken to see if we could see any of the tell-tell signs of Down Syndrome. When Patrick went with his mom up to the NICU to see Luke, the doctor reviewed his concerns, including the potential for lung, heart, and intestinal defects. Patrick asked what physical signs of Down Syndrome he saw in our baby. The primary sign was the extended bridge between the eyes and weak muscle tone among others. It was interesting, as Patrick looked he saw it one minute and then didn't another.

After the blur of emotions on Friday, Saturday proved to be a much more positive day. Not only did the doctor inform us that Luke had NONE of the additional possible defects, but the staff also managed to wean Luke off some of his oxygen. From the emotional standpoint, Jennifer, a nurse at the hospital visited our room to talk about her 15-year-old daughter who has Down's Syndrome. She spent almost an hour talking to us, discussing her own fears, hopes, and experiences when she received the news about her daughter. Then, she showed us pictures of her daughter on the cheerleading team, hanging out with friends, and so forth and our perspectives finally switched. Having a child with Down Syndrome was not "bad" news, simply just different news. As the story above says, we may have "planned for a trip to Italy", but Luke had something else in mind.

As we start this new chapter in our lives as parents, we hope you follow this blog to share in the joy that Luke brings to our lives.