Sunday Sustenance

"What is required of us now is a new era of responsibility - a recognition, on the part of every American, that we have duties to ourselves, our nation and the world; duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task.

This is the price and the promise of citizenship.

This is the source of our confidence - the knowledge that God calls on us to shape an uncertain destiny.

This is the meaning of our liberty and our creed - why men and women and children of every race and every faith can join in celebration across this magnificent Mall, and why a man whose father less than 60 years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath."

- Barack Obama

39 days old...

Connor's first bath - January 23, 2009

Connor had such a great day today that it deserves a quick post!

I arrived at the hospital this afternoon to assist with his wound dressing change. His surgeon was there to take a quick peek at his progress, and immediately announced that his time with the wound vac was over - it was coming off! This means that they'll start feeding him within a few days. His surgeon also mentioned that he's planning Connor's second surgery (to reattach his intestines) for three weeks from now, provided his feedings go well.

Since the wound vac was no longer attached to his body, Connor's nurse decided it was time for Connor's first real bath (since delivery). Previously, he had only been "spot cleaned" with disposable wipes. What a treat to be present this afternoon for such a fun event (at least I thought so)!

As we got started, his nurse warned several times that he was going to hate this bath, and was likely going to throw quite a fit. Much to our surprise, he really seemed to enjoy it... he sat calmly, with his eyes wide open, through most of it, as I fumbled around the wires still attached to him.

After Connor's spa treatment, his nurse swaddled him in a blanket (another first for him - the wound vac wouldn't allow it), placed him in my arms, and I spent nearly an hour just snuggling with him, and smelling his sweet head. What joy!

Clean as a whistle! - January 23, 2009

38 days old...

He's graduated from the preemie pacifier
to the newborn pacifier! - January 20, 2008

Sorry about my delay in posting this week!
Here's another quick list of Connor's latest developments:

• As of Sunday, January 18, 2009, Connor now weighs 1510 grams (3 lbs. 5 oz.), and is 38 cm long (15").
• The wound that developed from his incision is healing amazingly well! Although still scary, it looks so much better now than the point just before he received the wound vac.
  
• Pending the final decision from his surgeon, Connor's nurses and neonatalogists think that his wound vac might be removed over the weekend or early next week. Once the wound vac is removed, their plan is to begin feedings. They'll start by pulling the fluids he's already producing in his stomach and upper part of his intestines, and feed them into the lower ostomy to the lower part of his intestines, acting as an outside connector. If this goes well, they'll move on to Pedialyte and/or breastmilk. (Connor hasn't been "fed" since Christmas Day, and instead has received intravenous nutrition.)
• His previous need for daily blood and platelets transfusions has finally waned - it's been several days since Connor's needed either one. This is a good sign that his body is free of any infections!
  
• On Tuesday, we noticed that the fingers on his left hand were turning dark purple on the tips. With a little pressure, they turned white, just as they should, which meant that he still had great circulation. This arm also happened to be the one containing his PICC Line, and the doctor decided that the vein was spasming, causing the discoloration. Later that night, they decided to pull the PICC line, and in the interim, needing an active line, they inserted an IV into his scalp. (I know, scary!) Apparently, back in the day, scalp IVs were quite common, as the baby's head has very little fat and the veins are visibly obvious. He has a new PICC line now in his other arm, and for now the scalp IV is still in place. (We're anxious for it to be pulled the moment it's no longer needed!)
  
• Now with a gestational age of 32 weeks, his speech and physical therapists have started to get involved with his care. So far, their biggest concerns/main areas of focus relate to pacifier use and avoiding overstimulation.
• Have any of our readers banked their child's cord blood? This was a decision we made when faced with a potential preemie birth... with the hopes that the saved stem cells might one day prove advantageous to Connor. So, the night of Connor's birth, cord blood was retrieved and shipped to Cord Blood Registry. A few weeks later, we received notice from CBR that the cell count was too low. A normal cell count would be over 100 million, and Connor's was only around 31 million. We were basically told that perhaps sometime in the future, when cell replication is available, such a small sample would be viable, but until the technology is possible they don't feel the amount they have now will be useful. Some of Connor's doctors have been indifferent on the issue, while others don't believe it's worth keeping... but they all hesitate to advise us on this period. The CBR rep is giving us time to make a decision, and has offered us a full refund should we decide not to bank it. This is such a tough call... we're leaning towards letting it go, that maybe this is a sign that everything with Connor will be okay. If anyone reading has any information that can help us with this decision, please contact us!
  
• Looking ahead to next week, he has his 6-week cranial ultrasound scheduled. We hope to hear of continued positive progress on his IVH.

That's all for now... enjoy the new pics!

Charming? Check. - January 17, 2009

"No more pictures! I'm tired of that stinkin' red light already!"
(Just can't help myself...) - January 18, 2008

Taking a peek at Daddy - January 18, 2009

Connor and Grandma Rogers holding hands
during his wound dressing change - January 19, 2009

Chubby cheeks? Check. - January 20, 2009

His legs are "frog-folded" beneath him,
but to give you an idea of perspective... - January 20, 2009

Last few days, he's been super-alert and calm...
just staring back up at us - January 20, 2009

He might look like Daddy, but he's got more of his Mom's coloring...
natural coloring, that is - January 20, 2009

Connor and his "big boy" newborn pacifier - January 20, 2009

Grumpy old man face - January 20, 2009

Sunday Sustenance

"We should not underestimate or overlook the power of the Lord's tender mercies. The simpleness, the sweetness, and the constancy of the tender mercies of the Lord will do much to fortify and protect us in the troubled times in which we do now and will yet live. When words cannot provide the solace we need or express the joy we feel, when it is simply futile to attempt to explain that which is unexplainable, when logic and reason cannot yield adequate understanding about the injustices and inequities of life, when mortal experience and evaluation are insufficient to produce a desired outcome, and when it seems that perhaps we are so totally alone, truly we are blessed by the tender mercies of the Lord and made mighty even unto the power of deliverance."

- David A. Bednar

1 month old...

Connor, 1 month old - January 16, 2009

Naturally, when I really want to get an update out, I'm suffering from a bit of writer's block! So, for now, we'll stick with a bulleted list.

This week was full of so much good news for our baby boy, including:

• Continued healing of his wound. It's gone from over 3cm to about 1cm, and is closing up quite nicely. (As a parent, it's still hard to look at, but we're pleased at the progress of healing.) His nurses think the wound vac will be removed next week.
• Doctors thought they detected a small heart murmur this week, so Connor underwent a second echocardiogram. Happy to report that his heart looks great, and he does not appear to have any PDA issues.
• Being cautious, after finding gram negative rods (e. coli was found in his blood), Connor had to have a second spinal tap. Doctors were concerned that his infection could have become meningitis. Spinal tap was completed in record time, and came back totally clear.
• He seems to have successfully beat his latest UTI, and we're grateful that it didn't get much farther. Three days of negative blood cultures, and the doctors think he's past the infection. He will remain on his 14-day cycle of antibiotics, just in case.
• This week's cranial ultrasound showed some improvement regarding his IVH. His left side is now a Level II-Level I, and his right side is now a Level III-Level II.
• Connor had an eye exam this week, and was diagnosed with ROP. The ophthalmologist characterized his condition just at a Level II. Most children diagnosed with Level II ROP improve with no treatment and eventually develop normal vision.
• No longer a junkie, doctors decided Connor was well enough to go without regular, scheduled doses of morphine. As parents, we were naturally concerned that his pain level might be too high, but he's a pretty tough little boy, and has shown few signs of discomfort. It's also been fun to see him a little less sedated and more interactive.
• On Wednesday, he was strong enough to come off of his ventilator and has been tolerating forced, humidified air through a nasal cannula very well. This development also afforded us the opportunity to finally hold our little one for the first time since Christmas Day (it had been 20 days)... talk about heaven! Today was especially joyous as Connor gave smile after smile while I was able to hold him. His throat is still a bit sore, so we aren't hearing much more than squeaks, but we can't wait until we hear his sweet cry again.

What a crazy ride this past month has been! We can hardly believe our baby boy was born a month ago... being so stressful and busy it has flown by, yet it has also been the longest month of our lives. Connor has been worth every single minute!

We never could get through all of this with the love and support we've felt from family, friends (both real and imaginary), church members, and colleagues. Our faith has grown immensely over the past month and we're so looking forward to the day we're able to bring Connor home. Much thanks to all of you for helping us to stay on our feet!

(Ha! So much for that writer's block...)

More pics for your viewing pleasure:

Connor & Grandma Rogers - January 12, 2009

"If you don't take this tube out, I'm going to do it myself!"
Connor, hanging on to his ventilator tube,
moments before extubation - January 14, 2009

Free at last!
Connor with a nasal cannula and a lot less tape on his face,
after being extubated from the ventilator - January 14, 2009

Heaven on earth!
Connor being held by Mommy for the first time
since Christmas (20 days later) - January 14, 2009

In the past few days, Connor has fallen in love
with his preemie-sized pacifier - January 15, 2009

Connor being held by Daddy,
and helping with his pacifier - January 15, 2009

Connor being held by Mommy - January 16, 2009

Sweet shout-out

Micro-preemie diaper perspective photo courtesy of Kami of It's No Biggie

One thing I love about this blogging hobby of mine is the community you find with people I like to call my imaginary friends. They exist in real-life, just not in my real life... as in, we've never met in person, but we've become friends online. One of my favorite imaginary friends is Kami of It's No Biggie.

Most days lately, I barely get my e-mail read, and don't get to check in on too many of the blogs I used to read on a daily basis. Yesterday comments poured in from a bunch of you that I'd never "met" before, wishing us well, and offering us prayers and support. When I finally put it all together, I found this sweet shout-out that Kami had posted, directing her readers to our little blog. I think I had clued in over the past month that she, too, had her own preemie daugher, Avery (now a happy, thriving 6 year old!), but she really hit it home with her kind post. (To see a video of adorable Avery that I guarantee will make you grin, go here.)

Thank you, Kami, (and all of Kami's readers) for your generous support! That was just the boost I (we) needed. All of this has been so overwhelming, it's so comforting to know we're not alone.

The past six weeks of our lives have been such a blur... and sometimes I feel like a total zombie with my physical recovery issues and the struggle to pump, the drama that is Connor's day-to-day status, the lack of sleep, and the amount of stress we've found ourselves under. However, I.am.not.complaining. Connor is worth every minute of joy and every bit of heartache we might have to experience. This just isn't how we imagined the adventure with our first baby to be - this is not the ideal I dreamed about.

All in all, we're hanging on... life consists of a bit of work for Brian, a lot of pumping for me, some sewing for Mom, and we visit the hospital a few times a day. I wish we could spend more time each visit in the NICU with Connor, but it's just not a very comfortable environment (cramped space, noisy alarms, uncomfortable chairs). So, we do what we can with multiple short visits. Mom's planning on hibernating the next couple of days indoors (kinda don't blame her - right now it's -27 F, with a wind chill of -47 F).

Meanwhile, Connor's been doing really well, and has had some really good test results lately. Look for a more detailed post (fingers crossed) tomorrow!

27 days old...

One of Connor's first smiles! - January 10, 2009

The last few days have been somewhat quiet for our little boy... which is a really good thing! Friday, we were able to be there during his latest surgical consult. His wound dressings were removed, and while it still looks horrific to his parents, Connor's wound has shown some dramatic improvement in healing - his nurses and doctors were very pleased. (They'll change his dressings and consult with the surgeon again tomorrow.)

Seems like his NEC has subsided, and if all remains "quiet" for Connor, they may resume some feedings this next week, and in 4-6 weeks he'll be scheduled for surgery to reconnect his intestines. His need for platelets transfusions also are subsiding... also a good sign that no major infections are still brewing.

On Friday, they noticed some blood in his urine. (Yep, nothing's sacred for this little guy.) After several attempts to collect a sample, they were finally able to determine that he has another UTI. Once again, he's back on antibiotics... a slightly different blend than before. This morning he had an ultrasound to examine his kidneys. The doctor thinks he saw some clouding, which might even indicate kidney stones (like father, like son?). At this point they aren't sure what to tell us, so more tests have been ordered to determine what's going on.

Generally, Connor's still pretty lethargic whenever we're there with him. Until his wound has closed up a bit more, he'll continue to be on morphine. We're not complaining - the most important thing is for him to rest and heal and continue to grow stronger. Every day he does have a few lucid moments while we're visiting, with good eye contact... which brings absolute joy to us as parents!

Connor's first teddy bear... about 3" tall - January 8, 2009

Connor's "nearly 3 pounds" milestone - January 9, 2009

Little splinted arm to hold his latest IV in place - January 10, 2009

Holding Daddy's finger - January 10, 2009

Starting to "fill out" a bit - January 11, 2009

Holding Mommy's hand - January 11, 2009

Just 27 days old, and he already has more hair than Daddy! - January 11, 2009

Meanwhile, it's a winter wonderland here in Chicago... we're not even speaking out loud about how Thursday's high is only supposed to be 6 degrees, and now they're reporting a low soon of 10 below. With such balmy weather conditions, I don't think that my mom's going to leave the house for the rest of the week. What a sacrifice she's making by giving up her Phoenix winter this year to be here with us!

Finally, for your viewing pleasure, a quick video of some of Connor's first smiles! Please don't judge the shaky camera handling, poor editing, or cheesy music choice (I promise it's better than hearing Brian and I cooing at him).

Dang, this kid is adorable!

Sunday Sustenance

"Come what may,
and love it."

- Joseph B. Wirthlin

23 days old...

Our first family photo - January 7, 2009

FINALLY! An update! I'm sorry it's taken me a little longer to get this one posted, but thanks so much for caring how our little family is doing - I'll try to post more often.

Connor continues to be stable since his surgery on New Year's Eve. He's still on a ventilator, but is currently receiving no additional oxygen (breathing room air), and even breathing additional breaths against his vent. His heart rate and oxygen saturations have also been very strong. The past two days, he's been quite alert during our visits, and we've caught a few smiles!

The biggest development/issue we're dealing with right now is the area surrounding his incision. The surgeon believes that possibly another portion of his bowel has died around his stoma catheter, which has been causing his stomach secretions (acids and bile) to seep onto the tender skin around his incision. These fluids caused a serious and scary inflammation of his incision, and it basically began opening back up. As far as we know, his fascia has remained intact... but it looks so bad, the nurses were taking pictures of it, and contacting his surgeon for consults several times per day over the past week. Yesterday afternoon, we arrived for our family conference, and there were 6 people gathered around his isolette... sales reps for the new wound dressings, a wound specialist, and other nurses and doctors... while new dressings and a wound vac were applied. Rather than have his dressings changed every 4 hours (previously just a square of gauze held in place by his diaper), the new solution consists of fancy, high-wick dressings cut to fit his wound, a colostomy bag, and a wound vac to suction up his secretions (keeping them away from his incision)... and will only need to be changed every few days. They're still keeping him comfortable with morphine, and they've adjusted the number of handlings he has to go through every day - peace of mind to his parents that his pain is kept to a minimum.

Even with all of his incision drama, we're still in a wait-and-see pattern regarding his NEC. So far, according to his frequent blood tests, it doesn't seem like there's any further infection brewing. He's also been needing fewer blood and platelets transfusions, another good sign. If the NEC has resolved, he'll undergo another surgery in 4-6 weeks to reattach the two ends of his intestines.

As far as his IVH goes, they're telling us that there has been no change. We really won't know much more until he's at least 6 weeks old, and it sounds like he'll have an MRI at that point.

Connor is so strong, and continues to amaze us with how he's been hanging in there. While we haven't been able to hold him since Christmas, his nurse today raised the roof of his isolette, allowing us to get a little closer to him - kissing him and touching him more. Sometimes, it feels like it's just been one issue after another for little Connor. The nurses keep reminding us of how resilient these little babies are, so we're trying to remain positive with everything, and looking towards the future. We've been told that in the NICU it's one step forward, two steps back. This is the craziest rollercoaster ride we've ever been on!

Have we thanked all of you lately for your love and support?? One of the highlights of our day is checking e-mails and comments each evening. It really means a lot... you'll never know how much!

Starting to get chubby cheeks! - January 7, 2009

My two handsome boys - January 7, 2009

A peek at his new wound dressings and wound vac - January 7, 2009

Connor enjoying being "contained" by Daddy - January 7, 2009

Sunday Sustenance

"Our motives and thoughts ultimately influence our actions. Jesus repeatedly emphasized the power of good thoughts and proper motives: 'Look unto me in every thought; doubt not, fear not' (D&C 6:36).

"In Proverbs we read, 'For as he thinketh in his heart, so is he'
(Proverbs 23:7)."

- Dieter F. Uchtdorf

Words cannot express...

The outpouring of love and support we have felt from our church community has been truly overwhelming (in a good way).

We appreciate so much the visits, blessings, gifts, phone calls, and well wishes.

Now we hear that the ward has been asked to dedicate their fasting and prayers tomorrow to Connor and our family... we are truly humbled.

Thank you.

18 days old...

Connor being comforted by Daddy - December 30, 2008

New Year's Eve brought an unwelcome surprise in the course of Connor's care. Doctors approached us upon our daily arrival to the hospital to say it was time for our baby boy to face surgery due to NEC. Day after day, he had needed to receive platelets transfusions, and they were afraid that sections of his bowel were actually dead and the low platelets levels were indicative of the situation.

A short two hours later, Connor was on the operating table and we waited nervously for the next three hours for word of his condition. He endured surgery well, no situations arose. Sadly, they had to remove 20cm of his intestines, roughly 1/3. He currently has an ostomy, which will be repaired in time, likely before he leaves the hospital.

While we're not sure what this situation will mean for him long-term, the next several days and weeks will be quite telling. So far he has been very stable, and his labs and other tests have all come back favorable. The nurses and doctors have been monitoring him very closely since surgery, and are still impressed with how strong he is. We pray that he continues to improve, and that they're able to restart his feedings soon.

We're so grateful for the quick response of our home teachers to the hospital. One of them was able to swing by our home to pick up my mom and make it to Connor's bedside for a blessing, with incredibly short notice. We know Heavenly Father is watching out for our little boy, and offering us great comfort.

Connor, post-NEC surgery (a bit swollen, which is normal) - January 1, 2009

Now hanging at Connor's bedside

On a lighter note...

The only time in his life that back hair will be cute...
Connor's lanugo - December 30, 2008

My first "real" shopping trip on New Year's Day, since this saga began.
Those big box stores are way too big for me to walk right now,
so I opt for a scooter along with the 90-yr-old ladies.
This is me trying to run away from the man with the camera.

So true

The name Connor just happened to be one that both Brian and I really liked. The moments before his birth, while I was receiving my epidural, a quick confirmation revealed that Connor was the one name at the forefront of both of our minds. (Our plan was always to go to the hospital with 4-5 names, see what our son looked the most like, and choose the name from there.)

This past week I've done a little research on the meaning of his name, and was pleasantly surprised to learn that

Connor

means

much wanted

and

strong willed

Couldn't have described our little boy more perfectly!