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Friday, February 27, 2009

74 days old...

Connor's eye exam this morning showed his ROP to be regressing and that he's had new growth since Sunday. He's also had none of the common side effects from the laser eye surgery - inflammation or bleeding. His ophthalmologist will see him again in 2 weeks.

Still not eating... but that hasn't stopped the little guy from gaining weight! Another 100 grams yesterday - he's now 5 lbs. 15.68 oz - just barely shy of 6 lbs.!

Yay, Connor!

Thursday, February 26, 2009

73 days old...

Our sleepy, intubated boy - February 23, 2009

In his big boy crib! - February 23, 2009

Really hating his tube... - February 24, 2009

Connor's freshly extubated and in a SWING! - February 26, 2009

That was our happy surprise this morning when we arrived at the hospital to see our little one... his bed was empty, and he was in a swing... and LOVING it!

He's old enough now that he needs some additional stimulation... he's getting too bored just laying in the crib all day. So we'll be taking in a bouncy seat to see how he likes it.

When we had called at the crack of dawn to check on him, his nurse said that they had just changed his rate to 12 breaths per minute - the magic number from which he could be finally weaned - so we knew that today was going to be the day. But, they surprised us... he was extubated shortly after 9am, and put on the nasal cannula. However, he's only receiving a little flow of room air - no oxygen. The nasal cannula will likely only last for a couple of days, and then he'll be back to no respiratory support, just like he was before the 2nd surgery.

Also, the doctors have finally stopped his morphine and he's been tolerating his assessments just fine. His incision/wound is healing up nicely, and today looked much better from when I had seen it on Monday.

As for feedings, they're still pulling too much fluid from his stomach. When this amount decreases, his system will have begun absorbing/digesting the excess... so, they're just watching for that to start. His gut surgeon has recommended another couple of days and then they'll try the Pedialyte again.

An eye exam is scheduled for tomorrow morning... We're hoping that the ophthalmologist sees much improvement since his eye surgery last Sunday.

We'll keep 'ya posted!

Wednesday, February 25, 2009

72 days old...

A few changes so far this week...

As of last night, he's 5 lbs, 10 oz! Connor was too big on Monday to stay cool naked in the isolette (kept overheating), so he's been moved into a big boy crib - back to wearing clothes and being swaddled. He can't stand to be free and flailing, so swaddling's been helping with that.

Naturally, his incision from his gut surgery turned into a wound... he had some oozing last week, and the surgeon had to open it back up a bit. The fascia is still intact, thankfully, and the nurses are keeping a close watch. It's starting to heal up, slowly.

They've been slowly weaning Connor from his doses of morphine, saving them for the major hands-on assessments. He seems to be tolerating it pretty well.

He's still on the ventilator, but has been making huge strides in being weaned. He hates the tube, and we frequently find him with his hand wrapped around it, ready to pull it out. I would imagine if not later today, then possibly tomorrow, he'll be able to get rid of it (provided he's weaned from morphine as well).

His nurses deemed him stable enough to be held again, even while intubated, on Monday evening. It's a complicated process, but they've been perfectly patient to help get him situated and cozy in our arms. As much as we missed holding him last week while he was recovering from surgery, he seemed to miss it even more.

Yesterday, Connor took his first step towards feedings with 5ml of Pedialyte. He's been a super-duper pooper the last few days, so they were hoping his system could handle it. But, it was a little too soon, and he didn't digest it... we'll try again in a couple of days.

As for Brian and I - we're exhausted - mentally, physically, and emotionally. We'll hang on, because we have to, but we're so ready for this NICU experience to be over, and for Connor to be here at home with us. Hoping we're in the home stretch now. We so appreciate everyone's prayers and words of encouragement - it's all that keeps us going some days.

On a really happy note...
One of Connor's "girlfriends", Natalie, gets to go home soon - we couldn't be more thrilled! She was born a couple of weeks after Connor, and has had her own hurdles to overcome. Her parents have created a team, The Nat Pack, for the local March for Babies Walk this April. If you'd like to help out and donate to this cause benefiting preemies, please go here to sponsor The Nat Pack.

Monday, February 23, 2009

70 days old...

Just a quick update...

Surgery went well yesterday. Connor's been resting comfortably.

We're anxious this week to get him weaned off the morphine, extubated, back in an open crib (and able to hold him again), and EATING.

Should be a week full of changes for the little guy - we'll keep you posted.

Sunday, February 22, 2009

Sunday Sustenance

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."
- Eleanor Roosevelt

Saturday, February 21, 2009

68 days old...

Sometime last night, Connor pooped!
Oh happy day! ;)

If it weren't for his eye surgery on Sunday, they would probably begin feeding him soon. But, with that scheduled, it's better that we not rock the boat too much. So for now, we'll sit tight and celebrate this latest development. (Can't believe I'm so giddy about poop!)

Connor's still on regular doses of morphine, but his pain seems to be much less - he's been more alert and calm. He's still on the ventilator, but I would imagine he'll be weaned from that fairly soon (a couple of days) after surgery. Once he's off the vent, we'll be able to hold him again... man, it's been a long week!

As for his prognosis after the surgery, it's likely he will need glasses... but there's no guarantee. We're not concerned - Emery pretty much rocks his glasses, and Connor will, too!

We're a little anxious for Sunday, but we'll feel much better when it's all behind us. Crossing our fingers that this is the last major hurdle for our little boy. Thanks so much for your continued prayers.

Thursday, February 19, 2009

66 days old...

Never thought I'd be so anxious for POOP!

Still nothing to report in that department, but there have been other developments the past few days since surgery...

Connor had another eye exam this morning, and his ophthalmologist has determined that laser surgery will be necessary. Right now, the plan is for early Sunday morning, unless there are complications getting the OR scheduled and a surgical team assembled. (There's some talk that if things don't work out at Rush-Copley, they might transfer him to Lutheran... which we don't want to see happen at all.) The whole procedure should take less than 3 hours, and Connor will have to be put under and on the ventilator. So, where they might have extubated him before the weekend, they're just going to leave it in until after the procedure. We're not thrilled with this latest development, of course, but not treating him could lead to blindness.

Mostly Connor's just been hanging out - hopped up on regular doses of morphine to manage his pain, and sleeping a lot. He's peeked at us a few times, and will let us touch him, but only briefly. He can't handle much stimulation right now, due to pain, so we've kept our visits a little shorter than usual. His incision has opened up a bit and began oozing, but after what happened last time that led to needing a wound vac, they seem to be watching him a little more closely. It's been a long week so far, with Connor being sedated the whole time.

Currently, Connor is 5 lbs, 9 oz (a good portion of that being fluid retention after surgery) and 18" long. Can't even imagine how fast he'll be chunking up once he's able to start eating!

So, we're hoping that a week from now is a totally different story... off the vent, back in the open crib, less pain, awake, and POOPING!

Monday, February 16, 2009

2 months old...

Two months old today... and a very big day for Connor.

Early this morning, the ophthalmologist stopped by for another exam. One of Connor's eyes is showing some slight growth improvement, but it's looking like he may need the laser eye surgery after all. This procedure is far less invasive than today's, but he will still travel to the OR and be sedated and intubated for it. The ophthalmologist will reexamine him on Thursday, and surgery will likely happen on Monday.

Connor was nearly 5 lbs, 2 oz going into today's surgery... a pretty great fighting weight, wouldn't you say? Around 6:30am they intubated him, and by 8:00am he was in the OR. The OR nurse was really conscientious this time to give us a call each hour to update us on the surgery status and how he was doing. Great piece of mind (as much as can be expected anyway, when your baby is in surgery).

The surgery went very well - the upper part of his intestine was successfully reattached as it was, but the lower was resectioned in 2 places. There was a stricture, just as suspected, at the top part of his lower stoma... but a blessing in disguise, since it kept him from feedings prior to surgery. During exploration, a perforation was found a little further down - the spot of the second resection. If feedings had begun, Connor likely would have become quite sick and required emergency surgery. Sometimes, everything seems to happen for a reason.

We were able to see Connor around 11:00am. They kept him pretty sedated today so he can rest, and for now he'll remain on the ventilator. Hopefully they'll start weaning him in the next day or so., and move him back into an open crib. He'll be receiving pain meds regularly for 24-hours, and after that they'll reassess his needs. He's also a little swollen, but that's to be expected after surgery.

Once they notice a return of bowel function, likely in 5-7 days, Connor will be reintroduced to his feeds. Today was a major hurdle at the tail end of this roller coaster. And all in all, he's doing really, really well!

We're planning on a quiet few days, allowing Connor to rest up and heal, in preparation for FOOD (our next big step) in about a week.

Thanks for all of your thoughts and prayers... we've never felt so loved.

Eyes wide open... fully enjoying his "spa" (bath) experience - February 15, 2009

So fresh... so clean! - February 15, 2009

Our sleepy boy, a short time after surgery - February 16, 2009

Grandma Rogers's quilt, right where it should be - shading the isolette,
as part of Connor's recovery - February 16, 2009

Sunday, February 15, 2009

62 days old...

Happy Valentine's Day! - February 14, 2009

Connor is scheduled for gut surgery tomorrow, February 16th, at 7:30 am...
our baby boy is getting put all back together!

This is a huge step for us towards bringing him home,
and we're both nervous and anxious to get past it.

He'll be 2 months old tomorrow, too.
This little boy has been through more in the past 2 months,
than either of us in our entire lives.

He's at a good fighting weight - 2222 grams (4 lbs, 14.4 oz).
Wouldn't be surprised if he hits the 5-pound mark by Monday morning.

Wish us luck!!

Sunday Sustenance

"We can endure almost anything
if we have someone by our side
who really loves us."

- Jeffrey R. Holland

Friday, February 13, 2009

60 days old...

Jazz Hands / Spirit Fingers - February 12, 2009

Word from the ophthalmologist this morning is that Connor's ROP is stable, but he's showing very early signs of Plus disease. For now, he'll hold off on Connor's eye surgery, and examine him again in one week on Monday morning. I suppose it's good news that he doesn't need emergency eye surgery, but the diagnosis of Plus disease is worrisome.

An excerpt from the American Association for Pediatric Ophthalmology and Strabismus:

What is plus disease?
As ROP advances, the normal blood vessels enlarge and become twisted. This is known as plus disease.

What determines whether ROP requires treatment?
The severity of the ROP is determined by the stage of the ROP, the presence or absence of plus disease and the location of the disease within the eye. When ROP reaches a certain level of severity, the possibility of a retinal detachment becomes greater and the disease should be treated. The most recent recommendations suggest treatment of ROP when the disease reaches the following levels of severity:
1) zone I disease of any stage when plus disease is present,
2) zone I disease, stage 3 without plus disease, and
3) zone II disease that is stage 2 or 3 with plus disease.

For now, we hope and pray that the ROP / Plus disease does not progress any further, but begins to resolve itself. His nurse said this morning that it's entirely a possibility and she's seen it happen before... just like how his IVH developed, got worse, and then cleared up.

So, no dual surgeries on Monday - just his gut surgery in the afternoon... which still looks to be on, no more delays.

We're looking forward to a quiet weekend, spent visiting our little one...

Getting to know the goatee - February 12, 2009

Thursday, February 12, 2009

59 days old...

I wanted to document the many, many tubes and wires
that is all that Connor's known in his life so far... I thought I'd share.
Click on the image above to read the text a little easier.

UPDATE: As of tonight, Connor weighs 2128 grams or 4 pounds, 11 ounces! Way to GROW!

Here are the haps on Connor the past few days:

Monday was pretty much a downer of a day... his gut surgery was postponed, which was heartbreaking because every delay means just that much longer that he stays in the hospital. We went to visit him, and with his surgery being called off at the last minute, his nurse hadn't had a chance to pull him out of the isolette (prepped for surgery). Talk about deja vu in a bad way... the sight of him back in the box reminded us too much of where we used to be with him, just two weeks ago.

Later that day, we spoke with his ophthalmologist who informed us that his ROP has progressed from a Stage 2 to a Stage 3. (Read more about ROP here, here, and here.) Tomorrow, if his ROP has continued to progress negatively, his doctor will determine if laser surgery is needed (involving intubation and anesthesia).

His Monday night nurse mentioned that perhaps they'd be able to piggyback his surgeries on this upcoming Monday (Feb. 16) - which would mean just 1 trip to the OR, 1 intubation, and once under anesthesia. Doctors at the NICU have been helping to facilitate conversations between his pediatric surgeon and his ophthalmologist, who have agreed to work together if it's possible. Just today, the ophthalmologist mentioned that perhaps the topical steroids he'll be using in the eye surgery would poorly affect the healing he'll be doing after his gut surgery. Since his need for the eye surgery (preventing potential eye damage and blindness) trumps the somewhat "elective" nature of his gut surgery, he definitely undergo the eye surgery before Monday. We're not sure yet what this might mean in further delaying his gut surgery, but they should tell us more tomorrow.

Other than these complications this past week, Connor has been doing great! By Tuesday, his tests were all showing much improvement related to any infections they feared were brewing. All of his counts have returned to normal or near normal levels, and blood cultures have shown no signs of fungus or bacteria in his blood.

We also received awesome news on Wednesday regarding his IVH - nonexistent on one side, and negligible on the other - so much better than what we heard initially! Doctors are no longer concerned about this IVH issue, and will follow up with a standard MRI just before discharge.

Grandma & Grandpa Sprik came to visit over the weekend, and lots of time was spent snuggling with Connor. His Sunday day nurse (one of our favorites) even broke the rules and allowed all 4 of us at his bedside (the rule is only 2) for an hour or so while Connor got a bath.

All in all, he's had a pretty good week. As he gets older, we experience longer and longer periods with him awake, alert, and completely content... such bliss!

Tomorrow will bring us the news regarding his ROP... we're both anxious and nervous for what this will mean for his schedule of surgery. I'll try to post a quick update over the weekend, as we learn what's going to happen.

Thanks so much for your continued prayers in Connor's behalf... we've already witnessed them in action!

Cozied up to Daddy - February 5, 2009

Peeking at Grandma Sprik - February 7, 2009

Wide awake! - February 7, 2009

Making faces at Grandpa Sprik - February 7, 2009

Grandma & Grandpa Sprik - February 7, 2009

Peek-a-boo with Grandma Sprik - February 8, 2009

A few blissful hours, tube-free - February 9, 2009

Quite the charmer - February 11, 2009

Cuddling with Daddy after his bath - February 11, 2009

Born to be wild... AND talented!

For any of you that know my mother, you may know that despite her self-deprecating nature, she's quite creative and talented. A few days after Connor was born, she set out to make a special quilt to cover the top of his isolette in the NICU. She planned for it to be completely light-proof (nice and dark to protect from the bright lights of the hospital), the right size to cover the top and sides of the isolette, and something that he'll be able to use once he comes home. Sadly, my sewing machine was not quite tough enough to complete the project in its final stages, so she took it home with her to finish.

Connor's grown too big to be in the isolette now, but he'll be back in one next week for surgery. We'll be taking this cute quilt in for his recovery:

Did you also know she poses for pictures on motorcycles???

Friend CA with Mom on the back

Sorry, Mom! Could.not.resist! ;)

Wednesday, February 11, 2009

Welcome to Holland

I fantasized about becoming a mother my whole life... and ended up waiting a really long time to get here. I never thought I'd be 34 before I had my first child.

Needless to say, this experience has been nothing like I ever imagined it - frustrating infertility, pre-term labor and emergency C-section, not being able to bring my baby home, and the daily rollercoaster of successes and setbacks that is life in the NICU. (I'm getting deja-vu that I've written this all before... sorry.)

I'm not throwing myself a pity party. If I think about it too much, it all just gets me a little down. I know it'll be much easier to look back at this experience in several months or several years, so grateful for how far we've come.

I started reading a new blog about a little guy named Crew. He was born this past November, and has had a very similar journey to Connor's in the NICU. I spent a good bulk of time this morning reading all about his successes and struggles. Crew's mom posted this essay on his blog back in December. This helps me keep it all in perspective...

Welcome to Holland
By Emily Pert Kinsley

"When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.'

'Holland?!?' you say. 'What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.'

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... And for the rest of your life, you will say 'Yes, that's where I was supposed to go. That's what I had planned.'

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland."

Monday, February 09, 2009

Not today.

Connor's doctor just called to say that they've decided to postpone today's surgery until next Monday. The past few days they've noticed a decrease in his overall white blood cell count, and while his numbers are still generally good, they're concerned he might have an infection brewing. Gut surgery brings all sorts of risks of infection with it, and his doctors don't want to tempt fate with an "elective" surgery today.

We have mixed feelings... while we definitely don't want them to take any unnecessary risks with Connor, we're saddened that this may mean an additional week in the hospital for our little guy.

Patience... we're learning we need loads of it.

56 days old...

Before we head out for the day...

Connor is having surgery this morning, to reattach his intestines.
His surgeon is confident that things will go well, and that there shouldn't have to be much resectioning of his intestines, if any at all - no strictures have been found so far.

Connor had a really good day yesterday... lots of holding and snuggling, and a bath! They even had him off the nasal cannula. This morning, he's back to the isolette and the ventilator for surgery. His doctors plan to wean him off of the ventilator as quickly as possible after surgery, so he can get back to breathing on his own. Our hopes are that he's having his first meal since Christmas on Valentine's Day.

Thank you for your continued prayers on Connor's behalf... we'll keep you posted!

P.S. Last night's measurements: 4 lbs, 6 oz and 16.5"

Sunday, February 08, 2009

Sunday Sustenance

"The beginning of anxiety
is the end of faith,
and the beginning of true faith
is the end of anxiety.

- Unknown

Saturday, February 07, 2009

54 days old...

Just a quick update before the day gets started...

Connor keeps on growing - he's now 4 lbs, 4 oz!

Unfortunately, life without the nasal cannula was a little short-lived. He had a good day without it, and then started having too many bradys and desats (likely due to low blood volume). So, he's been back on the cannula, but he's at room air with a very low flow. For his surgery, he'll have to be intubated again anyway (and back in the isolette).

For a little while we were concerned that his vocal cords had possibly been damaged by his first intubation, because we hadn't really heard him cry since before Christmas. After he was extubated he barely let out squeaks here and there when he would get upset. This week, he's found his voice! While you don't like to hear your baby crying, I must admit Brian and I were relieved to hear him wailing the other night (and I think Connor was a little surprised, too). Each day when he gets upset (which really isn't very often at all), he gets a little louder, a little stronger... kind of like he's rediscovered the fact that he can make noise.

His enema went well on Wednesday, and so far, they don't see any evidence of strictures in his lower bowel. I got to be in the room with him, holding him still during the procedure... Connor is one brave little boy!

Looks like his surgery may happen as early as Monday. The sooner he's put back together, the sooner we get to bring him home. Please continue to keep him in your prayers.

Other than that, he's just been hanging out and getting stronger... just waiting for surgery.

I'll post more pics in the next few days...

Monday, February 02, 2009

49 days old...


Happy to report that Connor,
7 weeks old - with a gestational age of 33 weeks & 5 days,
is now a whopping
3 lbs, 15 oz
and is also
16.25" tall
(Birth stats: 2 lbs, 6 oz / 13.75")

For a little boy who hasn't had any food since Christmas,
we think this is pretty remarkable!

Another development??
(I know, you're thinking this just.can't.get.any.better!)


Have you ever seen such a cute philtrum? - February 2, 2009

That's right...
Little Connor is breathing completely on his own!!

Just peeking... - February 2, 2009

We couldn't be more proud! :)

Sunday, February 01, 2009

48 days old...

It's been awhile. I'm sorry. Thanks so much for wondering about us and our little guy!

This past week was our last with Grandma Rogers here to help out... so we've been super busy trying to get organized and situated. Whew! I think we're in pretty good shape now, thanks to all of her tireless efforts. Words cannot express how grateful we both are for her support the last two months (and for the sacrifice both she and Dad made)!
We love you...

Connor's had another pretty great week!
  • His cranial ultrasound on Wednesday showed some improvement with his IVH - on the left, he's progressed to below a level 1, and on the right, he's still between a level 2-3. This will be repeated again in 2 weeks.
  • Connor's billirubin levels were high early in the week. He's been on IV nutrition for so long now that the doctors believed it was likely an effect of not being fed normally. A liver ultrasound was performed, and thankfully, showed everything to be normal. They also drew another urine sample for cultures to rule out any infection - also clean. So, the chemicals/nutrients/minerals in his IV nutrition have been adjusted to bring these levels closer to normal.
  • His surgeon came on Tuesday to check him out prior to restarting his feedings. Unfortunately his exam didn't go as smoothly as we wanted it to, and it was discovered that Connor likely has a stricture (a narrowing or closure) somewhere in his intestines. On Wednesday, he will receive a barium enema (poor guy!) so that they can attempt to locate where the stricture is located prior to surgery. Then, he will have to be explored and possibly re-sectioned during his reattachment surgery (currently scheduled for February 11th). In the meantime, Connor will remain on IV nutrition and feedings will resume after his surgery in a week and a half.
  • Despite not eating since Christmas Day, our little guy is still growing! He's currently 1746 grams (3 lbs, 13 oz) and 15" long.
  • Connor's biggest development is that he's graduated to an open crib! Able to maintain his temperature on his own, he's been hanging out in his airy crib for 2 full days now, and is doing really well. We're now able to pick Connor up and hold him whenever we want, without requesting the assistance of a nurse. (Which surprisingly enough has been really huge and so freeing for Brian and me.) Just prior to surgery, Connor will have to return to the isolette and the ventilator, but we're feeling pretty good that with each passing day he gets stronger, and he won't spend long with either.
As for Brian and I, we're hanging in there... Constantly exhausted, but so completely in love with our son and pleased with his progress. We wouldn't be able to get through this without our faith and the love and support we've felt from our family, friends, and total strangers.
Much thanks to you all.

Gonna get heavy on the photos here...

Sleepy smiles - January 25, 2009

"Finally! They've given me something to do in here!
(But I'm going to need one for both hands...)"

A toy ring to help Connor keep from pulling his tubes out...

which he does at least once a week - January 26, 2009

Teeny-tiny fingers - January 25, 2009

Teeny-tiny toes - January 27, 2009

Just looking cute! - January 28, 2009

Wearing clothes... no more naked Connor!
This is preemie-sized...
he's nearly too long for the outfit,

but there's still plenty of room in the belly
- January 28, 2009

He loves being held... especially by Grandma Rogers! - January 29, 2009

Hanging on to Grandma's finger - January 26, 2009

Making faces - January 30, 2009

Working on his third chin - January 29, 2009

Happy to be in an open crib - January 30, 2009

Cute in his touque - January 31, 2009

Father and son - January 31, 2009

Sunday Sustenance

"[The Lord's] sweet assurance . . . can guide you and me--in our time, in our day, in our lives. Of course, we will face fear, experience ridicule, and meet opposition. Let us have the courage to defy the consensus, the courage to stand for principle. Courage, not compromise, brings the smile of God's approval. Courage becomes a living and an attractive virtue when it is regarded not only as a willingness to die manfully, but also as a determination to live decently. A moral coward is one who is afraid to do what he thinks is right because others will disapprove or laugh. Remember that all men have their fears, but those who face their fears with dignity have courage as well."
-Thomas S. Monson
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