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)

  

And the hits just keep on coming . . .

Clara tested positve for a MRSA infection. We are at the hospital now and don't have much more information. The infection control nurse will be here soon to talk to us about our next steps.  

Decisions, Decisions

Clara is still having trouble breathing. She is not back on the ventilator but is working harder to breathe than the doctors would like. Early Tuesday morning the doctors increased the amount of pressure in her nasal cannula (commonly referred to as "flow") from 3.5 liters to 4 liters. Tuesday afternoon the doctors ordered a dose of lasix be administered to Clara over three days. Lasix is a diuretic which helps rid the body of excess fluid and will hopefully relieve some of the pressure around Clara's belly and lungs. She has been on it before, but only in conjunction with a blood transfusion, and only for one day. If the lasix doesn't work, we will have some serious decisions to make.

Clara is most likely suffering from some form of bronchopulmonary dysplasia ("BPD"). This is a severe type of chronic lung disease affecting babies who were on a ventilator for a long time or were born very prematurely. Clara was only on the ventilator for about 36 hours, but certainly qualifies as a preemie. Another possible cause of BPD is if a baby received an infection in utero. This is also likely in our circumstance considering Chris' water broke as a result of an infection, her c-section was infected internally, and Clara was born with a high white blood cell count. Other characteristics of BPD include a bluish skin color and shortness of breath, both of which (especially when compared to Wilson) could be used to describe Clara.

If the lasix doesn't increase her lung capacity, the doctors will probably want to give Clara a dose of steroids to reduce the inflammation in her lungs. This doesn't seem like such a big deal, but there are numerous studies detailing the developmental risks of giving postnatal steroids ("PNS") to babies. In one study, 40% of the babies who received PNS had major disabilities (including cerebral palsy and mental retardation). In another study, doctors warned against using steroids at any point after birth but recognized some instances where it was necessary.

We always try to stay upbeat but this is hard. We should be having a baby shower this Sunday, not consulting with doctors to decide the best way to let Clara live. While we believe we are given what we can handle, we are quickly becoming disenfranchised by the infiniteness of that proposition. Hopefully Clara will pull through on her own. If she needs help, we will use all available resources to make the best decision for her.

Oh yeah, Wilson would probably want us to mention that he is doing wonderfully.  He now has nurses requesting him and trading with other nurses to take care of him. And no, we're not kidding.

Party like a rock star

Wilson partied a little too hard without his air cannula yesterday and was so tuckered out they put him back on it late this morning. Wilson also decided to do his best Jimi Hendrix impression and throw up while laying on his back. (We thought using Amy Winehouse would be too soon). The nurses think this is a reaction to the vitamins he received and we all hope this rock star behavior is nothing more serious. Wilson's spit up could be a sign of NEC, a very serious stomach condition in preemies with all kinds of nasty side effects, but we continue to take our cues from the professionals in the NICU and right now they don't seem too alarmed.  

Clara is also wearing the effects of a wild night in the NICU. After receiving two IV's in her hands, the nurses had to put the IV back in her head this morning. Hopefully by tomorrow she can tolerate enough breast milk that will she will no longer need the IV to supplement her nutrition, because right now she looks like she has been in a bar fight. The good news is her oxygen is going back down in the 35% range (21% is considered room air - which is what we breathe) and she is gaining weight. Tonight she officially became a member of the three pound club! The fact she is putting on weight as she continues to fight her way through this bump in the road is fantastic. Way to go Clara . . . keep fighting!

I'm gonna knock you out,
Mama said knock you out

August and Everything After . . .

We celebrated the end of June but unfortunately July didn't bring the reprieve we expected. Therefore, instead of celebrating the end of July, we welcome the arrival of August. On a side note, the title for this blog post reminds us we're old. Not because we are in our 30's and parents, but because the Counting Crows, Pearl Jam, and Nirvana have all been around for 20 years. I guess it's time to pull out the hyper-color shirts and get ready to tell our kids about pay phones, music stores, and VCR's. 

"Hey everybody, no air cannula!"

Wilson is starting August off on a good note. The doctors removed his nasal cannula yesterday afternoon and he is still breathing on his own! We know this probably won't last but it is great progress. Clara is doing better and we hope she continues on this trajectory. Our sweet little girl had to endure a lot the last few days - including having two new IV's put in last night. However, the doctors have taken her off antibiotics and are cautiously increasing the amount of milk she receives. Hopefully she will be completely off the IV nutrition by tomorrow.

The "mom" gene is in full effect as Chris
helps a nurse get Clara situated

Rockin' Roller Coaster

We went to bed last night exhausted from a day of worrying over sweet little Clara. Once again, everyone's thoughts and prayers paid off because her preliminary blood cultures came back negative! This is great news but we are not out of the woods yet. There is a chance Clara's blood cultures could still be positive when the results come back at 48 and/or 72 hours. She also had fewer episodes where she dropped her heart rate today, which is a positive sign. Clara's oxygen level remains around 35% - 40% (21% is considered room air and is the amount of oxygen Wilson is on) but that is down from Friday.

The doctors felt Clara was doing well enough to resume her feeds this evening. Before her episode on Thursday night, Clara was receiving 22cc's of fortified breast milk every 3 hours. The doctors kept the IV line in place and started her back at the cautious rate of 9cc's/3 hours. If Clara tolerates the milk (does not drop her heart rate or oxygen, spit up, have a distended belly, etc), the doctors will quickly move her back up to 22 cc's every 3 hours.

In spite of all this turmoil, Clara still managed to gain weight and is now at 2 pounds 15 ounces!! The doctors do not know what caused Clara to regress so suddenly on Thursday, but believe it could be related a "feeding intolerance." This happens because the digestive systems of preemies are incredibly sensitive and taking milk this early can be difficult. It is hard for us because we don't know what the problem is and there isn't a definitive cure for what we think is happening.  

The great news from today is that Wilson now weighs over 3 pounds!!!!!!!!! For whatever reason this is a major psychological hurdle for  us. We know 3 pounds is still incredibly small but it seems more developmental milestones are within reach once you hit the three pound mark. For example, at 3.5 pounds babies start to keep their body temperature and can be moved from an isolette to something that more closely resembles a crib. We will also be able to hold them more which will be wonderful.

Our little big man shows off his guns.
Three pounds, way to go Wilson!

The "roller coaster" analogy is proving to be true, but we really appreciate everyone joining us for the ride. Sure, we'd much rather be somewhere on an actual roller coaster, but it will be years before the kids are tall enough. (Ok, that was the worst joke ever made on this blog)

"You take the good, you take the bad, you take 'em both . . . ."

Anyone our age should be humming the Facts of Life theme song. You know, we never thought we would reference Blair and Ms. Garrett when describing how things were going for us in the NICU, especially to perfect strangers. Oh well, as we experience these growing pains, we realize it takes different strokes, and try to stay upbeat as life goes on. We just have to take it step by step and hope the kids blossom.  We believe our close family ties will cure our empty nest by giving us a full house so we can eventually experience the wonder years. (Gimme a break, that last one was definitely a stretch. We'll stop referencing 80's TV shows. Cheers!)

The good news from today is Chris went to the hand surgeon and he completely removed her cast! Chris starts physical therapy on Monday and Morgan's short-lived career as a breast pump valet is coming to a close.

"Free at last, free at last, thank God Almighty
my fingers are free at last."

But with the good comes the bad, and Clara is not getting better. So far we've been lucky, but last night we received our first 11:00 p.m. call from the doctor telling us there could be a problem. Clara's oxygen stats and heart rate continued dropping and, for the first time since being in the NICU, her CRP (C-reactive protein) tested positive. This is alarming because a positive CRP test could very well signal the presence of an infection. In response to the raised CRP levels, the doctors stopped Clara's feedings and began IV antibiotics. 

We knew this would be two steps forward and one step back, but this feels like twenty steps forward and 35 steps back. Before Clara and Wilson's intestines could tolerate breast milk, they received their nutrition from TPN (total parenteral nutrition) in their IV fluids. They were weened from the TPN as the amount of breast milk they received increased. Unfortunately Clara is once again receiving all her nutrition from the TPN in her IV. To make matters (seem) worse, the nurses couldn't re-use her IV line from the second blood transfusion, so her new IV was inserted in her head. 

We don't know where this leaves us and will continue praying for the best as the weekend continues. Hopefully this is something simple and normal that will correct quickly. On the other hand, we have to be prepared for something worse, like an infection or a digestive problem. The good news is Clara's echo cardiogram came back "ok" this afternoon, so we do not think this is a result of a problem with her heart.

Regardless of what is wrong or what happens, this reminds us how hard our babies are fighting and the continued fragility of their condition. We also try to look for the positive, and we saw it tonight as we were getting ready to leave the hospital. We went to Clara's isloette and Chris placed her hand on Clara and told her how much we loved her. At the sound of Mom's voice Clara opened her eyes, looked up at us with the IV sticking out of the top of her head, and smiled. She didn't close her eyes until we put the blanket over her isolette so she could get some much needed rest.

You try managing a smile on an all-liquid diet
with a needle sticking out of your head!