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.

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.

 

 

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).