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.

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!

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.