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.  

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.

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.

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

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?"

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.