How fast are your refluxes?

Clara didn't have such a great day again today. Her oxygen rate dropped a few times and her heart rate dropped while she was eating. When these episodes are viewed along with her recent weight loss, the doctors and nurses think she could be experiencing Gastroesophageal Reflux (or simply "reflux"). This is not an uncommon condition in preemies with underdeveloped intestines or chronic lung disease. Reflux can be very painful, but it is not life-threatening. At worst, if Clara has reflux it will add time to her hospital stay and give us more to worry about when she gets home. We just hate to see her suffer any more than she already has and hope this is a short-lived phase that won't have too many complications. 

Sorry tonight's post is so short but Chris has to work tomorrow, Morgan is really busy at work this week, and we spent a little extra time at the hospital. We'll (probably) have more news tomorrow.

In a little bit of amazing news, Wilson rolled over again. He didn't do it for the camera, but it definitely happened during "tummy time" with Chris.

We spoke too soon

Shortly after bragging on Clara's progress, the big steps she took late last week proved to be too much, too soon. On Friday, Clara lost weight, wasn't eating, and her oxygen saturation rate dropped. Early Saturday morning the doctors were forced to reinsert her feeding tube. This stopped Clara's weight loss but she still experienced a few sustained drops in her oxygen saturation which required stimulation to get her breathing correctly.

We aren't knowledgeable enough to know what this means. Like so many things in the NICU, the panoply of options is too vast to pinpoint an exact outcome. The best case scenario is that these latest episodes simply delay Clara's much anticipated homecoming. The worst case scenario is not readily available. A more likely option is that Clara won't come home in the next week or two (like we thought she would last week). When she does come home, Clara will likely require some sort of special apparatus or medication - whether it is a heart rate monitor, oxygen tank, breathing treatments, or simply orally administered diuretics - for her first few weeks/months away from the hospital. Clara had blood work and labs drawn today (as opposed to Monday) and we might have some more answers tomorrow.

From her unexpected delivery to testing positive for MRSA, Clara keeps us on our toes. However, regardless of what she encounters, Clara never stops fighting. Her strength makes it easier for us to stay optimistic. (She gets it from her mother . . . but you already knew that) 

On the other hand, we think Wilson is enjoying his first week away from the hospital. It is kind of like Wilson left home (the hospital) for college (our house) and is taking full advantage of his first taste of freedom. He doesn't care if he sleeps during the day and parties all night. He will drink too much out of a bottle before passing out and isn't a big fan of cleaning up after himself. In one week Wilson has pulled more all-nighters and puked more than most first semester freshman. He seems pretty content, but his roommates look forward to getting him on a more normal schedule.

We also found out at a doctor's appointment on Friday that Wilson' ROP (Retinopathy of Prematurity is a condition which can result in blindness for preemies - Stevie Wonder was a preemie and lost his eyesight because of ROP) is self-correcting and has been downgraded to Level 1.  We were very concerned about Wilson's ROP and thrilled to find out it was getting better. This truly is GREAT news. Hopefully Clara will follow suit and her ROP will self-correct as well.  

Lastly, we want to take a moment to remember the victims of the September 11, 2001 attacks and thank the many men and women whose continued daily sacrifices keep us safe. On a personal level, we want to thank Captain David McGarvey (now "Uncle Dave") for his bravery and service. We have told most of our friends about the incredible work Dave does for our military, but probably haven't told him directly how proud we are of his dedication and accomplishments. Uncle Dave left in August for his fourth combat deployment without having the opportunity to meet Clara and Wilson. Dave, hopefully you have time to read this in your part of the world. Please know we are proud of you, we love you, and we can't wait for you to meet the kids when you get back.  

Dave sent us a diaper bag made from one of his uniforms.
We did everything we could to get Wilson to salute . . . this is as close as we got.

Her tube is tied

Today was a big day for Clara! In a seemingly miraculous turn of events, the doctors removed Clara's feeding tube. Clara will be closely monitored to make sure she tolerates feeding naturally or from a bottle, but if she can eat on her own without dropping her heart rate and oxygen, and still manage to gain weight, her stay in the NICU could be nearing completion. Immediately after typing that sentence a knot formed in our stomachs. Those are some big "ifs" and Clara will have to prove she is truly strong enough to come home. We don't want to get too excited, but it is hard not to at least be encouraged by her recent progress.

We think it's great that the nurses love to dress up Clara.

Clara took some other big steps (not literally) today as well. The doctors stopped Clara's regular breathing treatments and changed her schedule from every 4-6 hours to "as needed." If Clara is wheezing or showing problems with her oxygen she could go back to routine treatments, but we hope that won't be necessary. This is big news because we really don't want to have to administer pulmonary steroids every 4-6 hours when she is home.

Clara also quit receiving caffeine today. Caffeine is commonly given to extremely premature babies to reduce their risk of developmental disabilities and help with apnea. Knowing what Chris is like without coffee in the morning, we are thrilled Clara will complete her caffeine withdrawal in the hospital. Plus we won't have to worry about how much Red Bull to mix in her bottles.

These are all big changes, so we expect there to be some ups and downs. However, this news validates our belief that Clara looks like she feels better. It is also nice to know the doctors feel comfortable enough with Clara's condition to ask her to do more on her own. We pray she adapts easily to life without breathing assistance, feeding tubes, and caffeine and continues growing so she can join all of us at home.

While we certainly don't want to rush Clara home before she is ready, it will be nice to have both kids under the same roof. Nursing two kids in two different locations is not a routine to which we want to grow accustomed. Morgan had to work late tonight and as soon as he got home, Chris handed off Wilson so she could go nurse Clara. On her way out the door, Chris said "I feel like a cow on wheels." The bright side is once they're both home, Chris will be able to feel like cow without wheels.

I'm smarter than you think

We were afraid Clara might finally lodge a complaint about all the kudos and attention Wilson received for graduating from the NICU. Instead of getting mad, it looks like Clara is trying to get even. Last night the doctors removed Clara's nasal cannula and allowed her to breathe on her own for the first time. Clara has now gone over 24 hours without oxygen and is doing fairly well! There were a few occasions when her respiratory rate spiked or her oxygen rate dropped, but the good news was she self-recovered quickly each time.

While this shows great progress, we understand it doesn't equate to a quick ticket out of the NICU. Clara still has a long way to go and continues to receive daily treatments to ease the stress on her lungs. Below is picture taken today of Clara inhaling some of the pulmonary steroids she needs to make breathing easier. As you can see, her nasal cannula has been (at least temporarily) removed. Wilson had his air cannula taken away three times before the doctors felt comfortable leaving it off for good. (Just as a comparison, Wilson waited another 3-4 weeks to come home after ditching his oxygen support). Clara is in a little different situation because she weighs more and is older, but she has also had more problems with her lungs. All of this is really just a long-winded way to say we're really excited about this development and are cautiously optimistic Clara will join us at home by the end of September.

We also want Clara to know she is lucky Wilson is the first one home because he has to be the guinea pig for our initial missteps as parents. For example, tonight we gave Wilson his first bath. We had little to no clue what to do and Wilson decided not to be helpful. As soon as we laid Wilson down and got him just a little wet, he opened fire. Chris was startled by his counter-attack and instinctively backed away from his little water cannon. In that split second of indecision, Wilson changed angles and began firing toward the head of his tub. With total disregard for her own safety, Chris jumped in to prevent Wilson from dousing himself in friendly fire. Chris received a commendation medal for bravery while Morgan was content to take pictures and make jokes. Hey, we all have our strengths.  

This is a live action photo but we cropped it for decency

Happy Birthday!

We've never wanted anything as badly as we wanted our kids to come home. It is literally all we've thought about, prayed for, and worked toward since the day they were born (June 17th). However, nothing prepared us for the experience of walking Wilson out of Kosair Children's Hospital.

Ok, we can make fun of ourselves; we were a walking Kleenex commercial. The crying started as soon as we removed the heart rate monitors from Wilson's chest. It didn't stop until much later that night. We cried saying goodbye to the nurses, cried walking down the hall, shed tears in the car, and resumed crying at the house. Morgan tried to act tough but finally broke down while sitting with Wilson on the couch later that night . . . which of course got me going again. 

One of the best things about yesterday was the normalcy. We drove Wilson home as if he was made of antique hand-blown glass. After gushing over him being home, it wasn't long before we were asking each other "what do we do with him now?" We worried about whether Wilson ate enough, stressed over whether he burped enough, and woke up whenever he made a sound. Sometimes we woke up just to look at him. And maybe that was part of the reason yesterday was so joyous. After having our pregnancy cut short and spending months in the NICU, yesterday we felt like normal parents - clumsy, worried, exhausted, and happy. 

To top things off, yesterday was also my birthday. Without question, getting to bring Wilson home was the best birthday present of my life.  

Oh yes, we've already started making them do ridiculous things.
How mad do you think Wilson would be
if he knew we put that bow on his head?

We still have a long road in front us. Wilson already has two doctors appointments scheduled this week. We also have to deal with the logistics of having Clara in the NICU. I have to nurse Clara at least twice each day and can't take Wilson with me to the MRSA wing of the hospital. In a true "welcome to the deep end of the pool" moment, I left Morgan alone with Wilson for a few hours last night, this morning, and tonight. Hopefully it won't be too many more weeks until we have them both under the same roof. (Wilson and Morgan are both nodding theirs heads in agreement).

Thanks again to everyone for your love and support. We have never felt alone on this journey and that is the only reason we've been able to hold onto our sanity. We're not halfway there in the traditional sense, but all we need to do is get Clara home for our family to be complete.There is no way we could have reached this point without you all joining us for the ride. 

The Grateful Dad

Truckin', I'm a going home

Whoa, whoa baby back where I belong

Back home, sit down and patch my bones

and get back truckin' on

Somtimes the lights are shining on me

Other times I can barely see

Lately it occurred to me

What a long strange trip it's been

Getting closer . . . again

The latest official word from the hospital is that Wilson will be coming home on Sunday. We know we've been down this road before, but this time we think it will happen. So now we're trying to squeeze three months worth of nesting into the next 48 hours. The nursery is almost complete. Hopefully we'll finish it tomorrow and be able to get the rest of the house ready so our little man can take things over. We have a feeling he is going to demand just a little bit of our time :)

It's easy to brag on Wilson because of his recent successes, but we couldn't be prouder of our sweet little Clara. From the time Clara's amniotic sac ruptured, she has had a very steep hill to climb. Breathing has been her biggest problem and this week the doctors ordered Clara receive daily treatments of albuterol and pulmicort - a pulmonary steroid - to open her airways and ease the stress on her lungs. There are very few side-effects associated with these treatments and so far Clara has responded positively. As of tonight she is down to one liter of pressure and her oxygen is consistently hovering between 21% - 28% (We all breathe 21% oxygen, so that is as low as you can go. At 21% Clara is essentially receiving room air). Almost as important, she just looks like she feels better. We don't have a timetable as to when she'll get to join Wilson, but we're hopeful she'll breathe easier, get stronger, and come home with us by late September or early October.

Besides her lungs getting better, Clara also continues
to take more of her food from a bottle and from nursing