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.    

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