Welcome to the Blog on Clara and Wilson McGarvey!

Clara's amniotic sac ruptured on June 7, 2011 when we were 24 weeks and 5 days pregnant. Ten days later, Clara and Wilson were born. They have already enriched our lives in ways we couldn't have imagined, and we wanted to share those experiences with our friends and family. So sit back and enjoy the read - they are full of excitment and surprises!


Wednesday, August 31, 2011

Quarantined

Late last night Mimi (yes, as of now that is her official grandma name) came down with the stomach flu. We were both in contact with her yesterday afternoon/evening so we called the doctors to see if we should see Clara and Wilson today. In an abundance of caution, we were told to stay away for 24 hours. Today was first time in 85 days we haven't made at least one trip to the hospital . . . and it drove us crazy. To avoid having the nurses think we were being completely neurotic, we coordinated different times to call and check on the kids. Neither of us feels sick and Mimi now thinks she might have had food poisoning, so odds are good we'll be back at the hospital first thing in the morning.

Unfortunately we don't have as much news to report because all of our information is second-hand. Wilson has not recorded any bradys today and gained a little bit of weight. Clara also gained weight which is good because they are more aggressively tyring to ween her from her feeding tube. She had some fluctuations in her oxygen but that could because she was trying to feed more from a bottle. We'll learn more when we're back at the hospital and should be able to give a better update on her lungs and new breathing treatments tomorrow night. As for us, we used our first day outside of the hospital to catch up on various work projects and Chris just finished the curtains she has been working on for the nursery. Nothing too exciting, but as we've learned over the last three months, sometimes no news really is good news.

Don't worry Clara, we'll be back tomorrow.

We're hoping to have the nursery finished before
their first birthday


Tuesday, August 30, 2011

Wilson is snot coming home today

Sometimes a picture says it all. So instead of metaphorically letting you know that once again the wind was taken out of our sails, we just figured it was easier to show you the helium is literally out of our balloons. For the third day in a row we woke up and got ready to bring Wilson home from the hospital. We weren't overly confident because of our experience yesterday, but when the doctors called it sounded like a sure thing. Then Wilson decided to have a bradycardia ("brady") and let his heart rate drop below 80 beats per minute. A brady is an automatic disqualifier for sending a preemie home, so Wilson will have at least a couple of more days in the comfort of the NICU before he gets to leave. (Although the neighbors are probably starting to wonder why we keep putting up blue balloons outside our house). 

Brady's are not all that uncommon with preemies and typically occur when they are feeding or having trouble breathing. We're not exactly sure what caused Wilson's brady today, but we are blaming it on the gunk they were able to pull out of his nose. One of the nurses used what can only be described as a preemie vacuum cleaner (seriously, it is part power tool) and was able to suction away adult-sized boogers. Of course we took pictures and below is a shot of one of the offenders.

That's one heck of a booger for our little guy
He probably lost weight after they suctioned his nose
We're hopeful Wilson will still be able to come home in the next three to five days, but are fine to wait until he is ready. We would much rather him have these episodes in the hospital than at our house.

In other not so positive news, Wilson continues to have a PFO -- a defect in the wall between the heart's two upper chambers that can allow unfiltered blood to bypass the lungs and circulate through the body. This condition can self-correct or be fixed surgically. Regardless, Wilson will have to see the cardiologist in six months to see how he is progressing. We think Wilson's PFO is completely unrelated to today's brady, but it does serve as a good reminder that coming home is really the starting line, not the finish line.

The last few days we've spent a lot of time talking about Wilson, but our sweet little Clara is doing what she can to grow and feel better. Her breathing is improving and she is gaining weight. She is also having an easier time accepting food from a bottle and nursing. The doctors started her on special breathing treatments and we'll have more of an update on that tomorrow. 

Hey everybody, don't forget about me!
  

Third Time's a Charm?

For the third day in a row we've been told we'll bring Wilson home from the hospital. We expended enough emotional energy yesterday that we are choosing not to believe Wilson is leaving until he is in our car. Nevertheless, the camera battery is charged, the car seat is ready and it is once again hard to sit still. We'll keep everyone updated as the day progresses.

Monday, August 29, 2011

We're sorry, your flight has been delayed

One of the doctors just vetoed Wilson's trip home. We're sorry for any perceived false alarms but we really thought Wilson would be coming home today. Chris spent the night at the hospital and Morgan's mom put up balloons and signs at the house. We had the green light until about 20 minutes ago when one of the doctors decided it was best to continue monitoring Wilson's weight gain from the NICU. Wilson also received an eye exam today and the doctors want to watch his response to that as well.

Sure, we're a little disappointed but we would much rather bring Wilson home when he is ready instead of rushing him home because we are ready. Such is the emotional roller coaster of the NICU. 

We know/hope we will bring him home soon and that is all that's important. (Although it would be great to get him tomorrow so we can re-use the balloons . . . just kidding . . . sort of)    

All systems go

Wilson passed his car seat test, gained weight, and is receiving final clearance to come home. We hope to be discharged from the hospital early this afternoon. Fingers crossed.

Sunday, August 28, 2011

Ready for launch?

"Get me out of  here!"
"This is McGarvey Twin 1 requesting a fly-by."
"That's a negative Twin 1, your belly's not fully."

We thought we would be bringing Wilson home today. He was circumcised, vaccinated, and still doing well on all of his vital signs. We weren't sure we were ready, but decided to take off the training wheels and bring him home rather than participate in the "Care by Parent" program (where you stay with your baby in a private room at the hospital before going home). Then we received a call from the doctor who told us Wilson did not gain any weight for the second day in a row and could not leave the hospital.

So it turns out instead of being ready for launch, Wilson was ready for lunch. In order to facilitate his weight gain, the doctors ordered Wilson to drink Neosure, a calorie-rich formula for preemies, twice a day. His weight is already up slightly tonight and we're hopeful that tomorrow will be the big day. Although it would have been nice to get him home during the weekend, Wilson's delayed departure gave us time to take our infant CPR class this afternoon and get some things ready around the house. Plus Chris will be able to stay with him all night to get some practice for when we are solely responsible for his care. 

While Wilson has been hogging the spotlight, our sweet baby girl is still doing everything she can to join him at our house. Unfortunately, Clara hit another little stumbling block early this morning when her temperature began dropping. Like Wilson, Clara also received some vaccinations this weekend, and we don't think she liked those shots. She isn't back in a temperature-controlled isolette, but they did place her under warming lights. Hopefully Clara can maintain her temperature and continue gaining weight so she eventually outgrows her oxygen support and is able to come home.

And if Clara needed any more encouragement, today she received a special gift from Coach Cal (via our friends the Haynes). We figure Coach Cal and "the Kentucky Effect" will get her home at least 20% earlier than the doctors planned. Thanks Coach!

Clara, welcome to the Big Blue Nation.
It should be noted Coach Cal also signed a basketball for Wilson.

Now that we've updated everyone on the kids, just a few words about our weekend. One of our good friends from college came into town on Friday night and helped Morgan put together the cribs and the Pack N' Play. On Saturday night, our good friends from law school threw us an incredible baby shower that was part-shower, part-party, and part-support group . . . all of which provided things we desperately needed. Because as much as we needed desitin and burp cloths, we also needed to see our friends and feel normal. They were able to give us all of the above and the experience made us again realize how lucky we are to have such amazing friends. We've said it before so we'll say it again, this entire summer would have been unbearable without the love and support of our friends and family. Thanks to everyone who was there on Saturday and all of you who are staying with us on the blog, through phone calls, emails, texts, etc - we hope you never realize how much we appreciate it.  

Friday, August 26, 2011

Ready or not, here I come

The nurses completely freaked us out yesterday by telling us Wilson could be home as early as Sunday. After pulling ourselves off the floor, we analyzed it and thought "that's not possible - Wilson hasn't had his vaccinations, didn't gain weight, and still needs to be circumcised." Internally we were also thinking "we're nowhere close to ready! The cribs aren't assembled, the nursery isn't complete, and we don't even have diapers or baby wipes yet! They can't send a baby home with us."

So we slept easy knowing Wilson was getting ready to come home but we still had several days to prepare. You would think by now we would know not to make logical assumptions or plan on something happening. Late this morning Dr. Rollo told Chris it looks like Sunday, Sunday, Sunday will be the day we get to start wrestling with Wilson at our house. It could still be Monday or Tuesday, but they are going to circumcise and vaccinate Wilson today with an eye toward us bringing him home this weekend.

Morgan: "We're two wild n' crazy guys"
Wilson: "Ahhhhhhh. Stop saying that!"
The only person more excited and frightened than us is Wilson. On one hand, he'll get to watch the opening of the college football season in high definition from the comfort of a brand new pack-n-play without having to share space with his sister. On the other hand, he is already telling the nurses, "you're sending me home with those two? Seriously, have you watched them? Compared to you all they are complete novices? It takes that raving lunatic who refers to himself as 'Dad' ten minutes to change my diaper before holding me up and saying dumb stuff like 'we're two wild and crazy guys.' Seriously, I'd rather be in the MRSA ward with Clara than give up the great room service I get here." Not that we needed anything else to make our situation unique, but it looks like everyone will need to adjust to having (or being) a baby at home.

So we're scared because we feel totally unqualified as parents, but we're also so excited we're having a hard time sitting still. Like kids waiting for Christmas morning, something we've been looking forward to for many weeks is about to happen and we couldn't be happier. This doesn't mean Wilson is "home free" - many more doctors appointments, examinations, and checkups are in his future - but we're bringing home half of the family we've wanted so much for so long. There will be some logistical problems with Clara still in the hospital, but light is beginning to shine at the end of the proverbial tunnel; that in and of itself is refreshing.

I'm not sure I'm ready for this.

Wednesday, August 24, 2011

Can you hear me now?

Having preemies is a nerve-wracking experience fraught with worry, speculation, and concern. Sometimes we fret over legitimate problems but other times we unnecessarily whip ourselves into a frenzy. Yesterday presented an example of the latter.

Our friend Christian came to the hospital to see the kids. As we updated her on how they were doing, Chris mentioned that she had been worried about Wilson's auditory ability until the nurses told her it was difficult to tell whether a young infant could hear. When telling Christian this, Chris looked at Morgan and admitted she hadn't wanted to worry him, but she had been talking into Wilson's ear with little to no response. She was worried about Wilson possibly being deaf but didn't want to stress out Morgan by putting something else on his plate.

Morgan laughed and responded by telling Chris he had the same worries! Morgan admitted even singing into Wilson's ear (the UK fight song and the Phish song "Wilson") and receiving no signs of recognition. Chris and Morgan were both tickled by the fact they were worried but didn't think the other had thought of the possibility Wilson could have sensory problems. However, it was Christian (a wonderful mother of two) who put the moment in perspective. She roughly said, "you all are crazy! Of course you don't think he can hear, he's an infant! And poor Wilson, he's probably thinking 'why do these people keep yelling in my ear!?!'"

We feel we know a lot about preemies but have a lot to learn about babies. And as the kids continue to grow, we need to learn quickly.

In other news, it seems the chronic diuretics are helping Clara. She is down to 25% oxygen from the 35% she was back up to a few days ago. She aslo seems to have a little more energy and was able to nurse for 15 minutes yesterday before passing out. Unfortunately she is not gaining weight, but that is not surprising since she no longer receives Prolacta (the human fortifier used to enrich her feedings - see our post below for more info on awesome power of Prolacta). 

Clara is also managing to be a good sport in the MRSA room. The poor girl has the loudest neighbor; it's amazing she can sleep in there. We jokingly told Clara we would bring in ear plugs but a nurse overheard and said they actually have preemie ear muffs to block sound! Although we joke about it, the situation is really sad. Clara's neighbor is going through withdrawal (or at least we think) and it breaks our heart for that little baby.


Listen pal, you are really loud. Talk to my hand because my ears aren't listening.

This lady doesn't know what she's doing.
I'll play along - weeeeeee!
Wilson is doing really well with his feedings. He took a bottle filled with 1 ounce 10 ccs of milk yesterday in under 10 minutes. He is a vigorous eater but is completely wiped out after eating. While he is eating well, he is not gaining much weight either. Since Wilson also finished his supply of Prolacta, the fix for this will be more food . . . which doesn't look like it will be a problem for Wilson. 
I love to eat. I'm so full and happy.

Monday, August 22, 2011

Weight for it...

Weight seems to be a real issue for the McGarvey family right now. Chris wants to lose it, Morgan wants to lift it and Clara and Wilson need to gain it! Chris and Morgan's weight issues are easily resolved - eat less and workout. Well, in theory that is easy. Clara and Wilson on the other hand, do not have such a simple solution for their weight goals. In July, right before the car wreck, we posted about Clara and Wilson being put on a human fortified breast milk. At the time we didn't go into much detail about it but it was a REALLY big deal. So here is the story behind our first breast milk adventure. 

Most preemies are fed fortified breast milk so their growth more closely imitates the development they would experience in utero. We had no choice whether to use fortifiers for Clara and Wilson because Chris' milk is "skim milk" and is low in calories. (And no, there is nothing you can do to raise the caloric content of your breast milk - otherwise Chris would have been eating huge steaks and drinking raw eggs). However, not every fortifier is created equally. There are two ways breast milk is fortified: 1) through formula enriched with bovine protein (most common); or 2) with formula enriched with protein from human breast milk (extremely rare). If you can get it, human fortified breast milk is much better for preemies because their sensitive digestive tracts are more likely to reject anything foreign (like cow's milk).

The attending physician(an expert in nutrition for preemies) highly recommended using human fortified breast milk but cautioned that we probably couldn't get insurance to pay for it. That doctor had obviously never dealt with Chris.  

A company in California called Prolacta is the only manufacturer of human fortified breast milk. They extract proteins and calories from donated breast milk to make a super all-human fortifier. If Chris makes liquid gold, they make liquid platinum. This is an expensive process but has great results in preemies. Most importantly, studies have shown preemies that are fortified with Prolacta vs. a bovine fortifier are 70% less likely to get NEC (a horrific intestinal infection). The Texas Children's Hospital just announced they are partnering with Prolacta to launch a new donor breast milk program. Here is the article, it's a quick read. You may be wondering, how can Texas Children's Hospital afford such an expensive fortifier? The state of Texas covers the human fortifier, the state of Kentucky does not. Long story short, Chris was able to procure Prolacta milk for Clara and Wilson. To give you an idea of how rare it is for someone to get Prolacta in the NICU at Kosair, a rep from the company had to come in and show the hospital staff how to mix the milk.

But the effort was worth the time and money. Clara and Wilson each weigh over four pounds (Clara hit four pounds this weekend, lost it for a day, but is back today) in large part because they have been able to tolerate and increase their feedings. There have been a few hiccups along the way, but nothing like we have seen or heard others experiencing. The Prolacta has thus far been a true blessing.

Unfortunately, Clara and Wilson had such success that the hospital decided to stop paying its share of the Prolacta. We knew this would happen likely happen once they reached a certain weight, but are sorry to see it go. Gone are the nights when we call to check on Wilson and learn he gained 70 grams. The doctors are going to watch Clara and Wilson over the next 10 days and, if they don't gain enough weight, will fortify their milk with bovine supplements. It will be easier to use the bovine formula now because their digestive tracts are more developed, they are beginning to nurse, and the fortified formula would probably be administered only two or three times each day. Still, we're sorry to see it go.

In other news, Clara and Wilson's Uncle Dave (Morgan's older brother) deployed today to support our country's efforts in Afghanistan. Due to his crazy schedule with a new unit, Clara and Wilson weren't able to meet their Uncle and will have to wait until he returns sometime this winter. We are incredibly proud of David and wish him a safe tour of duty. We can't wait for him to someday thrill the kids with war stories from overseas.  

It's a few days old but we finally uploaded the pics
of Morgan'sMom holding Clara

Sunday, August 21, 2011

Somewhat Normal

Dictonary.com defines normal as "conforming to the standard or the common type; usual; not abnormal; regular; natural." We don't really know what a normal pregnancy is, but know there are certain "normal" milestones we have missed. So far we have been focused on taking care of Clara and Wilson in the NICU. This weekend it feels like we're finally starting to think about taking care of them when they get home. Morgan picked up the cribs this weekend and we are starting to get the house (somewhat) ready for babies. It feels nice to do some of the "normal" nesting we didn't have a chance to do before Chris' water broke.

We also had our first baby shower today. Some of Judy's close friends threw a beautiful shower for us in honor of Clara and Wilson. The shower was absolutely perfect. Our Kentucky family was there along with several of the long-time friends and neighbors who watched Morgan grown up. Mrs. Anderson, Mrs.Wilson, Mrs. Metheny and Mrs. Martinez went out of their way to plan and throw such a wonderful celebration. Plus, it was really nice to experience what "normal" people do when they are preparing to bring home baby. The gifts will hopefully be put to use very soon!
Oh my! Two of everything!!!!

Chris with the hosts o f the shower (from left to right Mrs. Metheny, Mrs. Anderson and Mrs. Wilson, not pictured is Mrs. Martinez)
We went to the hospital after the shower to visit Clara and Wilson. This is the first time the nurses have ever seen us both looking somewhat presentable. I won't say they didn't recognize us, but way too many of them told us how nice we looked. I guess that tells you how we look most days at the hospital. Ouch. 

The good news is Clara and Wilson were both doing well. Clara did have a moderate spit-up this morning during her feeding, so the doctors increased the amount of time in which she receives her food. As long as she tolerates the same amount over a longer period of time it isn't such a bad thing, but it is a step backward in terms of getting her home. Otherwise, Clara's oxygen was fairly stable and she looked like she felt a little better. I know that last part isn't very scientific, but she didn't look like she was working as hard to breathe as she was at the end of the week. Maybe the lasix is helping. We're tired now and want to get the week off to a good start so are going to try to get some sleep. We'll have more news on the kids tomorrow.

Are we there yet?

We know the babies are growing and are making progress and we want to know, are we there yet? Just like the answer we hope to give the kids several times during a family road trip, no we're not there yet but we're getting closer. Clara and Wilson are now 35 weeks gestationally which leaves us with another five weeks in the NICU if they come home around their expected due date of September 22nd. We think Wilson will come home before then but he still has to master taking all his feeding through a bottle or breast. 

Unfortunately, we don't have any timetable on when Clara will be home and our sweet baby girl is struggling again with her breathing. She is still at 2 liters of oxygen but is closer to the 30%- 40% range than the 20% - 30% range. Her oxygen levels started creeping up earlier this week which made the doctors nervous. They debated putting her on chronic diuretics, but decided to give her another round of Lasix (a diuretic to rid her lungs of excess fluid). The hope is Clara will not need additional oxygen and the Lasix will allow her to maintain status quo until she outgrows the need for all this oxygen. The reason the oxygen flow and percentage is so important is because if she is working extra hard to breathe then she is burning extra calories. When she burns too many calories she does not grow; when she doesn't grow, she doesn't produce new lung and she will never grow out of chronic lung disease. We want to end this vicious cycle so we can get her healthy and bring her home! Other than struggling with her oxygen, Clara is doing well. She is now an unbelievable four pounds and one ounce!

Wilson is contemplating entering the Annual Nathan's Hot Dog competitive eating contest. Something happened Friday and Wilson decided he had enough of his feeding tube and mastered the art of breast feeding at noon and took an entire bottle of milk at 6pm. We are pretty sure this comes from the Danner side of the family - the Danner's do love to eat. Then again, Morgan eats like he has a tapeworm. Either way, Wilson comes by it honestly.

Here are two of our favorite pictures of Clara and Wilson from this week.
I love being held!

yummmm....Hot Dogs!

With smiles like that, we want them home. So it looks like we're turning into the annoying people in the backseat continually asking the doctors "are we there yet?"

Wednesday, August 17, 2011

What, two months already?

Today Clara and Wilson are two months old. However, we were a little apprehensive about this day arriving because the 17th hasn't exactly been our lucky day this summer. Clara and WIlson were born in a surprise delivery early in the morning on June 17th and we totaled Chris' car (which required Chris to have hand surgery for a severed nerve and severed artery) on July 17th. When August 17th arrived, we were nervous about even leaving the house. We're back home now but the day isn't over yet, so we're not taking anything for granted :)

We planned on taking a picture of Clara and Wilson with their birthday hats on the 17th of every month until their first birthdays. Wilson was still subjected to an embarrassing photo but Clara will get a pass until she is out of the MRSA ward. We are not allowed to take anything into her isolette that we want to bring out, so she'll have to wait until she gets home for her next official birthday photo.  Although we can't use too many cliches to describe how this feels (because time hasn't flown by and the first two months didn't get here in the blink of an eye), it is amazing to see how much Clara and Wilson have grown in the past month. They're growing like weeds! (And there was the obligatory "we can't believe how much they've grown" cliche) 




  









Unfortunately this evening wasn't all birthday hats and fun pictures. Clara's oxygen was increased from 28% to 35% and her heart rate and respiratory rate skyrocketed around 8:00 p.m. We talked with the doctors and they ordered another blood transfusion for Clara to calm things down. This is bad for three reasons: (1) Clara is not producing enough hemoglobin; (2) her anemia makes her work harder to breathe which increases the oxygen she receives and burns extra calories; and (3) it is more dangerous for her to have intravenous lines with MRSA possibly colonized on her skin. 

We hope this works and Clara will not need another transfusion, but one thing we have realized over the past two months is that this is out of our control. One of the doctors told us early on preemies require God and time. We believe both are on our side. Although it is still very difficult to watch Clara suffer - Chris left the NICU in tears again tonight - we remain thankful for her progress and hopeful that this story will have a happy ending.

A Normal Crazy Day

The NICU is never boring, but there are occasionally times when it at least seems routine. Yesterday was not one of those days. The morning started with a visit to Wilson. I should have known something was abnormal when Morgan offered to change his diaper. A few minutes later a nurse walked in with the results from Wilson's eye report and casually informed us Wilson had Stage 1 ROP, or Retinopathy of Prematurity. ROP is the condition that causes blindness in preemies and is what caused Stevie Wonder to lose his eyesight. Without more information, we freaked out. We learned later in the day that this is completely normal and a lot of preemies test positive for Stage 1 ROP. The doctors will monitor Wilson but told us not to worry unless his condition develops into Stage 2 or 3 ROP. Whew . . . for now.

We left Wilson's room and went over to see Clara. When we arrived we found a nurse getting ready to move Clara to a big girl crib! This completely came out of left field. Apparently Clara's weight shot up - by the end of the day yesterday she weighed 3lbs 13oz - and the nurses wanted to see if she could maintain her body temperature outside of the isolette. Since the move was so sudden, and we didn't know how long it would last, we immediately called Clara's Kentucky grandmother to let her know she could hold Clara when she came to the hospital. We still don't have an official grandmother name for Morgan's mom (Mimi, JJ, JuJu, Mama J, Grandma, etc are all in contention), but Clara was held by her paternal grandmother for the first time early yesterday afternoon. We told you Clara didn't like Wilson being so far ahead of her . . . and we appreciate her doing her best to catch up!  

However, we weren't sure Clara was ready to maintain her own body temperature for an extended period, and by last night she had moved back to the comfort of her isolette. Although it was nice to have her in a "crib," we would much rather Clara not waste valuable energy or calories staying warm. The pictures of Clara with Grandma are on another camera, but hopefully we'll have those uploaded by tonight.

Also, as a welcome relief, our power was restored at some point yesterday afternoon! It was nice to be back at home but we are incredibly thankful to the different people who housed and fed us the last couple of days.
 
 

Monday, August 15, 2011

I used to be cool

In news that was hard for me to believe, MTV turned 30 years old last week. Well, MTV has been around for three decades and I don't feel so good myself. Just like MTV, I used to be cool. As Wilson and Clara progress, the reality of motherhood is setting in. My sporty Volvo was replaced by a wood-panelled family institution on wheels. Instead of staying up until four o'clock in the morning, I'm getting up at four o'clock . . . to pump. Rather than enjoy drinks with old friends, I'm providing drinks for new friends. The fast and free pin-up days of my youth are long gone, replaced instead by a slow and scheduled motherly glow. The first picture of me was taken a mere five years ago and the second picture was taken this weekend. What a difference a few years make!

Chris circa 2006

Chris circa last weekend
Other than the realization things are changing fast, not too much to report. Clara's progress from the weekend slowed today and she required more pressure and slightly more oxygen to breath comfortably. She is currently using about 2 liters of pressure at 30% oxygen. Her hemoglobin count was low this morning and that could explain why she is once again using more energy to breathe. However, with a possible MRSA infection, the doctors are hesitant to give her a blood transfusion because of the risk of infection. Hopefully Clara can produce more hemoglobin on her own and keep getting better.

Wilson is still doing great but decided to follow Clara's lead and register a low hemoglobin count today. The docs aren't as worried about Wilson and are also going to see if he can increase his hemoglobin without any assistance. The good news is both kids continue to gain weight and increase the amount of food they receive. We want this trend to continue so they will grow, get stronger, and hopefully come home by their due date (September 22nd). Maybe by then someone from LG&E will restore the electricity to our neighborhood so the kids don't have to do everything by candlelight too. (Just kidding about the candlelight, we're at someone else's house . . . not kidding about still having no power. Oh yeah, forgot to mention the station wagon is just a loaner until we get something to replace the car we wrecked. I may no longer be cool, but the Griswold Family Truckster will be gone shortly). 

Sunday, August 14, 2011

Fight the Power!

We took this pic less than 1/2 a mile
from our house
The McGarvey Militia was called into action today for "Operation Rescue Milk." Like most of Louisville, we lost power in the crazy storms that blew through yesterday evening. Losing power is not that big of a deal unless you have four freezers (two at our house and two at our next-door-neighbors' house) full of breast milk. The milk cannot be used if it thaws - even a little - because of the risk of bacteria forming. This risk is amplified with preemies due to the sensitivity of their digestive tracts and weakness of their immune systems. So this morning we sprang into action. Coolers were borrowed, Morgan's parents and some of our friends retrieved and stored as much milk as they could, and we packed three big coolers and headed to the hospital. We had so much milk two nurses had to help us label the bottles while another nurse rounded up a wagon to carry it all down the hall. We lost a few brave bottles during the Operation, but were able to save the majority of our supply.

In our previous life, a cool summer evening without power would have been cause for celebration. We would go out to eat, stay out to drink, and get to sleep in the next morning. Ah, how pumping has changed things. We still used the power outage as an excuse to meet some friends for a late dinner, but we had to be around electricity so Chris could pump. Just remember, pumpin' ain't easy. We stayed with a friend Saturday and hoped our power would return overnight. We should have known our luck wasn't ready to change. 

Several readers pointed out that we haven't updated the blog for almost three days. Mea culpa. We were a little lax this weekend but it wasn't for lack of big news. The biggest news from the weekend was Wilson being held for the first time by his paternal grandmother. We told Wilson how important this event was and he didn't disappoint. Not only did he stay awake for a few minutes, he didn't spit up any milk or poop his pants while his Kentucky Grandma (we haven't decided names but "Mimi" is in the lead) held him. Sure, expectations were a little low, but Wilson made Mimi incredibly happy. This was a moment she had anticipated for quite some time and it was really cool for us to see.  

Wilson is still on the fast track at the NICU. He is breathing on his own, receiving some of his nutrition from nursing, gaining weight, and maintaining his body temperature. Wilson has not had to go back in his isolette and we're hopeful he will remain in his open air crib until he comes home. It was a little shocking however when the doctors told us Friday night he could be home in as early as 2 - 4 weeks. Are you kidding!?! That's great news (if true) but we are far from ready to have a baby at home. Chris' water broke before we really could get started on a nursery and we still have some work to do before our house is ready for babies. Part of our delay in posting is due to the amount of time we spent Saturday getting ready for our new roommates.

This was also a good weekend for Clara. She has not received any steroids since Thursday and is breathing easier. She still requires a nasal cannula with around 30% oxygen but is receiving minimal pressure. We'll know more about her progress - and prognosis - earlier this week but are cautiously encouraged by what we've seen this weekend. We'll have lots more posts this week and hope the good news continues. (And if anyone from LG&E is reading this, please restore the power in the Highlands. Thanks!)

Thursday, August 11, 2011

McG Cribs

Check out the big news today - Wilson was moved to his first "big boy" crib. He was so impressed he wanted to show off and take everyone on a tour.


We're a few Scarface posters, a PS3, and a couple of outrageous cars in the garage from Wilson making the NICU edition of MTV's cribs. That's right, Wilson has his own crib!! Sorry for being repetitive, but we are that excited. Weighing in at a whopping 3 pounds 15 ounces, it feels like Wilson is officially a baby! It is so exciting for us to see his progress because we know we are one step closer to bringing him home. The NICU is generally two steps forward and one step back, and it is likely Wilson will have to spend more time in an isolette until he can maintain his body temperature, but this is a big milestone. When we called to check on him the nurse said he was already a "little cool." If his temperature does not go back up to at least 98.0 degrees, he will have to go back in an isolette for a while. We expect this process will go back and forth for a few days. Morgan stopped by after work to have a guys night with Wilson. Here are some pictures from the evening... 

 

Sweet baby Clara settled down from her roid rage and spent most of the day sleeping. She is down to 1.5 liters of flow and is staying between 21% - 25% on her oxygen levels. These numbers are better than yesterday and we are anxious to see if she can keep up the good work over the weekend without any assistance.  Clara also reached a big milestone today - she weighs 1.51 kilograms. Once a preemie hits 1.5 kilograms the doctors and nurses begin the process of weening them from their isolettes. This is fun because they are able to wear clothes as the temperature is turned down inside the heated isolette. Watch out Wilson, Clara does not like to miss out. In fact, we are a little concerned with her lack of patience that she will skip the crib and go straight to a toddler bed. Clara is now up to 30 cc's of breast milk every 3 hours and will start the nursing process at the end of this week/early next week.

Another thing we noticed this week is Clara really likes to be held. She gets comfortable, snuggles into you and sleeps the time away. While sleeping in our arms she not only looks more comfortable, her her heart rate and oxygen also stabilize. Needless to say this is keeping us at the NICU more often, but there is nowhere else we would rather be.





Wednesday, August 10, 2011

Sorry, they can't all be gems

There were no car wrecks, no surgeries, no staph infections, and no treatment decisions today, so we thought we would be ready to run a marathon right now. However, for whatever reason we're really tired and flipping coins to see who has to write the blog update. So we apologize for the brevity and typos and will try to bring our "A" game back tomorrow. Or as our friend Norm used to say, "sorry, they can't all be gems."

Clara didn't have any problems today but also didn't show as much improvement as she did during the first 24 hours she received steroids. Her oxygen level is a little bit lower than it was yesterday but not she did not gain any weight. This round of steroids will run its course tomorrow afternoon and we'll have to wait until the weekend to see if she is able to keep a lower oxygen level and gain weight without juicing up. 

We also wanted to explain why we haven't had many pictures of Clara lately. After Clara tested positive for MRSA, she was moved to an isolated wing at Kosair. We have to wear gowns when visiting and there are strict rules about what you can bring in and out of her area. Unfortunately, we can't take pictures with a camera and then bring it out of the sterilized unit. We're working to find a way around this problem, but there will be far more pictures of Wilson until we do.


Wilson had another great day. He didn't need any help breathing and gained another ounce. He was born at 1 lb, 15oz and weighed 3 lbs, 14 oz today. He has gained almost two pounds in less than two months! (Ok, it is more impressive if you think of it as a percentage of his birth weight). You normally don't want the fattest kid in the nursery but we're hoping to take that prize.

Wilson looks like a burrito . . . a 3lb 14oz burrito!

Tuesday, August 9, 2011

Maybe kinda sorta a good day?

With Clara starting steroids yesterday, and our recent luck, we really didn't know what today would bring. We thought we received our first indication in the parking garage at the hospital this morning. Chris was driving behind an old woman going slow enough that a line of cars formed behind her as we ascended the various levels to find available parking. Finally, this woman decided to park in a handicapped spot - yes, the handicapped tag was already hanging from her rear view mirror. Unfortunately, she was well past the spot when she decided to park, so she put her car in reverse. The only problem was Chris was the first car behind her. Chris couldn't back up because of the cars behind her and couldn't move to the side because there was no room, so she started honking her horn. The old granny in front never flinched as she backed right into Chris.

It gets better. As you know, we totaled Chris' car a few weeks ago and have been driving Morgan's parents' old beat-up 1996 full-size Buick station wagon. It is literally a tank with wood panelling. However, when the old woman got our of her car she told Chris "I didn't see you." What!?! The wagon is the size of a small island, the headlights were on, and Chris was laying into the horn while frantically waving her arms and screaming at the woman to "STOP!". Stevie Wonder could have avoided our car. Then the woman said, "I just want to get in that spot, so could you back up a little?" Chris tried to politely explain there were other cars behind her and agreed to drive around and come back to get her insurance information. The wagon actually received a pretty good battle scar, but the cargo was just fine. 

We weren't all that phased by our luck in the parking garage and just thought this was going to be another typical day in the summer of 2011 . . . but it actually sorta kinda turned out to be a good day. Most importantly, Clara and Wilson were wonderful today. Clara has only been receiving steroids for 24 hours but is already showing improvement. She is consistently between 21 - 28% on her oxygen and is down to 2.5 liters of pressure. (She was at 40-45% oxygen and four liters of pressure this weekend. Oxygen is like golf, the lower the scores the better you're doing). We won't know the short-term outcome of this steroid treatment until the weekend, but are celebrating her current improvements. Clara also gained a little weight and is now up to 3 lbs, 5 oz. Pretty soon they will begin weening her from the temperature controls in her isolette and we'll be able to dress her in some of her cute preemie clothes.

Wilson also had another good day. He weighs 3 lbs, 13 oz and is barreling toward four pounds! He is breathing on his own for the fifth day in a row and getting cuter by the second. Also, both kids tried nursing today. It was Wilson's third time nursing and Clara's first. Both kids did fairly well and will hopefully receive at least one of their daily feedings naturally or from a bottle in the next ten days. They have to be able to receive all of the food naturally or from a bottle before they can come home, which is part of the reason we get excited about these improvements.

We have no idea what tomorrow will bring, but are thankful for a reprieve from an otherwise pretty stressful week. Hopefully these good trends continue. (And really, can we catch a break on the car wrecks?)

Wilson tried to pull out his feeding tube, but
look at those chubby little fingers!

Monday, August 8, 2011

Roid Rage

Clara had a pretty good weekend, but her lungs were still not where they needed to be developmentally this morning. We knew this was likely and talked with several doctors over the weekend, including doctors from outside our practice group about what course of action to take. All of them told us the same thing; if it were their child they would give her low doses of steroids to reduce the inflammation in her lungs. Clara received her first dose of dexamethasone today and will continue receiving small doses for the next 72 hours. The doctors will re-evaluate her at 48 and 72 hours to assess the impact of the steroids and determine if any further treatment is required. We hope to avoid additional exposure to steroids, antibiotics, or a ventilator by beginning the treatments now, before her breathing gets worse.

There are developmental risks associated with administering steroids to babies. Steroids can weaken the immune system and increase the chances for impaired neurological development.  Those risks are less likely with smaller doses of steroids administered over short periods of time, which is why we are giving her a small amount for only three days. This was not an easy decision, but we believe it was the best decision in light of her current circumstances. We hope and pray it works. And who knows, maybe the steroids will finally help a McGarvey become a star athlete. Although if she has our coordination, we'll have to find a sport that only requires strength. Great, Clara's doomed to become a weightlifter.

While Clara is stealing the headlines, Wilson is doing everything he can to become a "normal" baby. He hasn't had any help breathing for over four days, is doing a good job maintaining his body temperature, and continues gaining weight. Today he tried nursing with Chris and it was very successful (for this stage of his life). Preemies typically do not develop the ability to suck, swallow and breathe at the same time until around the time they are 34 weeks gestationally. Wilson will not reach that marker until this Thursday, but was able to suck, swallow and breathe for a short time today. Chris even had to burp him when he finished.Wilson will still receive most of his nutrition from a feeding tube, but this was a big first step.  

This is the first time we've held him like a baby. The other times have been kangaroo care - skin-to-skin.

Saturday, August 6, 2011

Fifty Days in the NICU

Today is our fiftieth day in the NICU. My how our lives changed in fifty days! If all goes according to plan (ha! what plan?!) Okay, let's try that again . . . if Clara and Wilson get to go home "around" their due date of September 22nd, today marks the half way point of our stay in the NICU. There are moments, even days, when this seems insurmountable, but then we look around the NICU and see glowing parents strapping a baby into the car seat and are filled with hope that we will be those parents in another fifty days.

Even with all of the ups and downs, some things remain constant; pooping is very important in the NICU. Our sweet baby girl had a major blowout (on the nurse) last night and apparently that was what she needed. After her explosion, the nurse decreased Clara's oxygen flow from four liters to three liters and her oxygen percentage decreased into the thirties for the first time in two weeks. The doctors are still worried about the condition of her lungs, but any improvement is a welcome sign. She is already back in the 40% range tonight and further treatment will likely be necessary to reduce the inflammation in her lungs. We really appreciate all of the thoughts and prayers for Clara. Today we celebrate her improvement with caution, as we know she still has a long way to go.

Wilson on the other hand, seems to be enjoying his stay in the NICU. He has people feeding him, changing him, and generally making sure he is comfortable. In the last 50 days he has been to the tanning bed (the ultra violet lights used for jaundice), experimented with several all-liquid diets, received sponge baths, and been coddled with skin-to-skin massages. So far it has paid off. Wilson continues to gain weight and has been breathing on his own since 11:45 a.m. on Thursday. He is also doing a great job of maintaining his body temperature which means he will likely move to an open air crib next week!

The NICU is far too often referred to as an emotional roller coaster, but that is the most concise way to describe this experience. In the past fifty days we've felt the incredible highs of becoming parents and watching our children grow. We also experienced staggering lows brought on by fright, uncertainty, and helplessness as our kids struggle to overcome so much so quickly. In the whole scheme of things, however, we know it could be much worse. Neither of our children has measurable bleeding in their brains and both of their hearts are functioning as well as can be expected. The only truly scary news we received was about Clara's MRSA infection and the potential problems with Clara's lungs. We therefore try to focus on the positive and remain thankful for the overall upward trajectory. We appreciate all the love and support and truly have faith that this story will have a happy ending.

Below are pictures of Clara and Wilson taken on the day they were born and pictures taken in the last day or two. You can already see how far they've come!





Friday, August 5, 2011

ENOUGH ABOUT CLARA ALREADY!!!

*Picture not posed. Wilson knocked his passie on his head
and was clearly wondering where it went and why it wasn't in his mouth.
"Hey!?! What's the deal around here? I'm getting bigger, breathing on my own, and acting cute but no one is talking about me. Enough about Clara already. A little credit please. This @#$% isn't easy." - Wilson's comments after reading the blog.

Wilson, thank you for letting us know how you feel. We are very proud of the progress Wilson makes on a daily basis and cannot believe his transformation over the last seven weeks. The nurses removed Wilson's air cannula at noon yesterday and he is still breathing fine on his own. He also weighs a whopping three and a half pounds, which means he will hopefully be able to maintain his body temperature without assistance. The doctors are already lowering the temperature in his isolette and hope to have him in an "open air" crib in the next week or two. As we know from personal experience, anything can happen, but Wilson's first 49 days have been a miraculous success. (We used to be afraid we would jinx ourselves by saying things like that, but honestly, if we had that kind of power we would use it). 

Now that we have given Wilson his due, we want to update you on Clara. Unfortunately, Clara continues to regress and everyone is becoming hyper-vigilant about the condition of her lungs. The lasix did not help her breathing and she continues to exhibit classic symptoms of BPD or chronic lung disease. Once we get through the MRSA scare (we'll receive her blood cultures back today) a decision will have to be made on the course of Clara's treatment. We talked with the doctors at length last night about the risk of using steroids versus going back on a ventilator or taking a wait and see approach. Bottom line, there is no easy decision. However, we feel very comfortable the doctors understand our wishes and will do everything they can to maximize Clara's chances for long-term success. That's all we can ask. Other than that it will take God and time to get past this phase. 

We can't tell you how much it means to us to have people call, text, email, or even just read the blog. We might not be the best correspondents right now, but our friends and family make this (barely) tolerable. This has been the roughest week for us since they were born, and we are truly humbled by your support and love.    

Thursday, August 4, 2011

Answers to the name "Lucky"

There is an old joke about a flier for a lost dog who is blind, has three legs, is missing his right ear, had his tail run over, was accidentally neutered and answers to the name "Lucky." That's a little bit how we feel right now. Clara tested positive for MRSA, a nasty form of staph infection resistant to antibiotics, but we are lucky because it is not in her blood, lungs, or spine. The infection colonized on her skin and should only harm her if it enters her blood stream. Unfortunately, this can happen through IV lines and other openings in the skin - both of which are constant possibilities. Clara will receive a clorohexidine gluconate ("CHG") bath every Monday and Thursday to reduce the risk of the infection spreading, but there is no definitive cure. Clara will be considered MRSA positive for the remainder of her stay in the NICU.

The doctors didn't pull any punches and told us this was bad, but stressed it could be much worse. As long as the infection doesn't spread to her system, Clara should not have major complications. However, Clara must remain isolated until she is released from the the hospital. This means she was evicted from her cushy suite across from Wilson and is literally across the street with other MRSA positive babies. We feel like she went from the Waldorff-Astoria to the Motel 6. Instead of her own space, Clara's isolette is lined up next to the isolettes of the other MRSA babies along a non-descript wall in a sterilized wing of the hospital. There is no sink, no table, no chair, and no privacy. Also, because of the risk of infection, we have to wear gowns and gloves when visiting her. 

However, we try to remember these circumstances are much harder for us than they are for her. It is more painful for us to know she will not see Wilson again until she gets home than it is for her. It is not easy for us to leave the comfort of the nurses who took care of Clara for the first seven weeks of her life, but Clara will still receive top-quality medical care. It is difficult for us to encounter the tactile reminders - the gloves, gowns, and infection barriers - that something is wrong with Clara, but hopefully she won't notice. The most important thing is that Clara gets better, and hopefully she is in the best place for that to happen.

Aside from the emotional roller coaster, there are logistical challenges as well. We cannot go see Clara and then go see Wilson because of the risk of transferring MRSA. We have to visit Wilson first and, if we visit Clara, are supposed to change clothes before seeing Wilson again.

So right now we feel a little lost, and if a flier was posted for us it might read "looking for parents with two kids in the NICU, a totaled car, a bum hand, now growing gray hair in their early thirties, and answering to the name Lucky." You know though, if anything, this has made us realize we really are lucky - we have great support from incredible friends and family, good jobs, fantastic medical facilities, and two really brave kids. So go ahead and get ready, their one year birthday party is going to be epic (MRSA gowns hopefully not required).

Although we tried to narrate some of what happened yesterday, these pictures do a better job telling the story. (Sometimes it does pay off to have a professional photographer with a national geographic photography project following your family)