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). 

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!)

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.

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!

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!

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.